#COVID19 Resources from the NIDILRR Grantee Community

Updated May 29, 2020.

Many members of the NIDILRR grantee community have responded to the coronavirus pandemic (COVID-19) by publishing, presenting, or curating resources to support the continued independence and participation of people with disabilities and their families, and the professionals who work with them. We are actively collecting these resources as they are published. This list is growing every week, so check back regularly. New items are posted first; older items are listed alphabetically by project or center, and the date of the most recent update will be posted above.

NEW: Rehabilitation Engineering Research Center on Improving the Accessibility, Usability, and Performance of Technology for Individuals who are Deaf or Hard of Hearing

This RERC has created a number of resources for inclusive remote work, including guidance from consumer groups for employers and employees on making remote workplaces accessible for Deaf, DeafBlind and hard of hearing workers. The information for employees includes an ASL version (video).

AbleData

The AbleData team has a blog series called AT for Being at Home published through their Facebook page. Each article highlights different assistive technology (AT) solutions for at-home activities. Topics include gardening, working out, sewing, and gaming, with more topics in the pipeline. https://t.co/QyqYvh9fUp 
Keywords: Assistive technology

ADA National Network of Regional Centers

The ADA National Network and its 10 regional centers help people with disabilities, employers, and public entities to understand their rights and responsibilities under the Americans with Disabilities Act (ADA). The regional centers are operating, though their physical offices may be closed due to stay-at-home orders. Call 800/949-4232 to reach the center for your region. The National Network and the centers host a Twitter chat (4/22) on ADA, Healthcare, and Effective Communication. Some of the centers have published resource pages.
Keywords: ADA, accessibility, healthcare, barriers, civil rights, effective communication, rural health, telehealth, mental health

Boston-Harvard Burn Injury Model System Center (BH-BIMS)

The researchers at the BH-BIMS published a letter to the editor in the journal Burns, COVID-19 pandemic and the burn survivor community: A call for action. The letter to the editor highlights the impact of the coronavirus pandemic (COVID-19) on people with burn injury, including reduced access to inpatient and outpatient medical and therapeutic care, loss of peer support leading to increased isolation, and triggers for post-traumatic stress disorder. The authors also suggest resources for support and education for burn survivors and care providers. The article is available free in full text.

Collaborative on Health Reform and Independent Living (CHRIL)

CHRIL and its stakeholder partner American Association on Health and Disability (AAHD) collaborated on a series of short videos on COVID-19 and Disability:

  1. COVID-19 & Disability: Who’s at Risk for Complications?
  2. COVID-19 & Disability: Social Distancing
  3. COVID-19 & Disability: Precautions for People in Wheelchairs
  4. COVID-19 & Disability: Keeping Wheelchairs Clean
  5. COVID 19 & Disability: Being a Self-Advocate
  6. COVID-19 & Disability: Knowing Your Legal Rights

Cognitopia

Cognitopia has developed several NIDILRR-funded technology solutions for people with cognitive and processing disorders such as brain injury and autism. Cognitopia added a collection of COVID-19 resources to the Staying Healthy portfolio in My Life. It’s designed to provide cognitively accessible information related to the coronavirus, including reliable links, instructional videos, personal care routines, and collected other info to help folks get through a difficult time. Cognitopia’s MyLife tool can be used remotely by a student and their support team as they transition from school to college or work. See a set-up example using Jon Student and his transition goals and activities.
Keywords: Cognitive disabilities, community participation, personal care

Community Living Policy Center

This center conducts research in policies and practices that promote community living outcomes for individuals with disabilities. In response to pending legislation which could impact services and supports for people with disabilities, the center published two briefs: Understanding the Home and Community-Based Services COVID-19 Response Proposal describes bills to increase funding for states’ home and community-based services, specifically how the increased funding would help ensure care at home, minimize wait lists, increase wages for health workers, and provide for sick leave; An Emergency Direct Care Conservation Corps Proposal proposes ways to strengthen the direct care workforce to reduce the spread of COVID-10 and preventable emergency department visits and hospitalization of vulnerable people.
Keywords: Home and Community-Based Services (HCBS), direct support providers, policy, legislation

Model Systems Knowledge Translation Center (MSKTC)

MSKTC works with the Spinal Cord Injury, Traumatic Brain Injury, and Burn Injury Model System Centers, developing and curating resources to help people with these injuries, their families and caregivers, and rehabilitation professionals. In this special issue of their monthly newsletter, MSKTC shares resources to help individuals stay healthy during the coronavirus/COVID-19 pandemic.
Keywords: Spinal cord injury, traumatic brain injury, burn injury, health and wellness

Mount Sinai Spinal Cord Injury Model System

This center conducts research and development to help people with spinal cord injury (SCI) recover and return to their communities. Principal Investigator Thomas Bryce, MD, answered Frequently Asked Questions about COVID-19 and SCI for United Spinal. Topics covered included risk of contracting the virus, the impact on respiratory function, and when to consider going to the emergency department.
Keywords: Spinal cord injury, risk factors

National Research Center on Parents with Disabilities and Their Families

This center conducts research and training to support parents with disabilities, help them understand their rights and advocate for services and supports. The Center hosted a Twitter chat Parenting with a Disability During COVID-19:Insights from the #COVIDDisParenting Twitter Chat, where parents with disabilities shared their helpful strategies for staying healthy, active, and engaged; unique concerns and experiences; preparedness and unmet needs; and more. This center also hosts a parenting blog and is accepting articles from parents with disabilities about their COVID-19 experiences (participation closes May 15).
Keywords: Parents with disabilities, parenting

Northern New Jersey Spinal Cord Injury System Center (NNJSCIS)

This center conducts research in interventions in rehabilitation and supports for people with spinal cord injury (SCI). In the COVID-19 and Spinal Cord Injury: Minimizing Risks for Complications podcast NNJSICS director Trevor Dyson-Hudson, MD and Carolann Murphy discuss some of the risks for people with SCI who may have reduced lung and cough function due to paralysis, and techniques and devices they can use to improve their cough. They also discuss the challenges of limiting social or physical contact when working with a personal care attendant, when a personal care attendant is unavailable, and keeping wheelchair contact surfaces clean and disinfected.
Keywords: Spinal cord injury, risk factors, respiratory health, personal care attendants

Rehabilitation Engineering Research Center: Develop and Evaluate Rehabilitation Technology and Methods for Individuals with Low Vision, Blindness, and Multiple Disabilities

This RERC conducts research and development in technology solutions to current barriers to opportunity faced by individuals who are blind, have low vision, and have multiple disabilities. This includes barriers to careers in science, technology, engineering, and mathematics (STEM). The team created an accessible pandemic bulletin, A11y COVID-19, to display data on infection rates that is accessible to screen readers and can be “sonified” on demand. The browser plays a different tone for each level on the graph, rising as the data indicates higher numbers.

Rehabilitation Engineering Research Center on Augmentative and Alternative Communication (RERC-AAC)

This center conducts research and development in AAC, technology that helps people who cannot communicate verbally because of neuromuscular disorders, autism, and other conditions. A recent article from the RERC highlights the need for effective communication to help these individuals understand what is happening and express their needs, wants, and important care details. The article describes how to prepare in advance for someone with complex communication needs, how to support understanding of COVID-19 for whose who may have difficulty understanding complex communication, ways to support expressive communications for someone who cannot rely on speech, and suggestions for healthcare workers providing care for someone who cannot communicate.
Keywords: Accessibility, communication, augmentative and alternative communication

Rehabilitation Engineering Research Center on Improving the Accessibility, Usability, and Performance of Technology for Individuals who are Deaf or Hard of Hearing

The researchers at this RERC assembled three guides to respond to communication issues that have emerged during this crisis: virtual meetings (now ubiquitous for working while under stay-at-home orders) need to be accessible for employees who are Deaf or hard of hearing, and hospital staff need to communicate with patients with hearing loss.
Keywords: Accessibility, communication, Deaf, hard of hearing, workplace accommodations, medical facilities

Rehabilitation Research and Training Center for Learning and Working During the Transition to Adulthood (Transitions ACR).

This center focuses on young people with mental health conditions as they transition from school to college and/or the workplace. COVID-19 Resources for Youth and Young Adults features curated content from including news stories from around the country, a Google Spreadsheet with hundreds of resources for youth, young adults, families, college, educators, and supporters; webinars on methods to support college students with mental health conditions who have been affected by disruptions in school; and selections from Transitions ACR publications and products which may be of help to students, administrators, and counselors.
Keywords: Psychiatric disabilities, youth, young adults, transition, college

Rehabilitation Research and Training Center for Place-Based Solutions for Rural Community Participation, Employment, and Health (RTC: Rural)

This center conducts research and training activities that address the unique needs of people with disabilities living in rural communities. The staff is assembling resources to inform people living in these communities about the virus in general, ways to connect with services, and more.
Keywords: Rural, remote services, vocational rehabilitation, geography, economics

Rehabilitation Research and Training Center on Community Living and Participation for People with Serious Mental Illness

This center focuses on how people with serious mental illness engage with their community, from family leisure to creating welcoming workplaces and community spaces.
Keywords: Psychiatric disabilities, community participation, social isolation

  • Keeping Connected while Staying Apart includes a running list of resources to stay connected and engaged, the powerpoint from A National Conversation on Community Participation (3/26) and links to ideas for staying engaged (virtual theater, online class communities, art and learning programs).
  • Resources for Remote Community Participation (PDF) includes an extensive list of high-tech, low-tech, and no-tech ways to stay connected.
  • ConnectionsRx, a new program providing one-to-one support for individuals to identify interests AND the opportunity to connect to meaningful activities through a support group on Facebook. 

Rehabilitation Research and Training Center on Employment of Individuals with Blindness and Other Visual Impairments

Staff from this center led a recent forum discussion on remote training in vocational rehabilitation, through the Older Individuals Who are Blind – Technical Assistance Center (OIB-TAC). Since most training for people with visual impairment occurs face-to-face, many professionals are searching for new procedures to offer training during quarantines and physical distancing. Sylvia Stinson-Perez and Kendra Farrow, both Certified Vision Rehabilitation Therapists, facilitated discussions on working remotely, providing services and training in a remote environment, and identifying helpful resources.
Keywords: Blindness, visual impairments, employment, remote training, vocational rehabilitation

Rehabilitation Research and Training Center on Employment of People with Intellectual and Developmental Disabilities

This center focuses on the practices and policies that support successful employment of people with intellectual and developmental disabilities (I/DD), including autism spectrum disorder (ASD). The center has set up a collection of videos for families and professionals supporting individuals with ASD. How to: Teaching Handwashing explains how to cover hand hygiene, learning styles and challenges to consider, and examples of teaching strategies. How to: Handwashing for Individuals with ASD demonstrates hand hygiene in simple, straightforward language and images.
Keywords: Intellectual and developmental disabilities, autism, videos, personal hygiene

Rehabilitation Research and Training Center on Employment Policy and Measurement (EP-RRTC)

The EP-RRTC hosts monthly discussions on the state of employment of Americans with Disabilities as reported in the Bureau of Labor Statistics Jobs Report, along with related disability employment issues. On May 15th, 12pm ET, the EP-RRTC will host National Trends in Disability Employment (nTIDE) Special Report – Implications of COVID-19, where a team of experts will share their latest perspectives, based on data from a population survey released mid-month, on the coronavirus pandemic and its implications on employment, emerging bills and policies, and resources for the days ahead. The discussion will be archived for future viewing.

Rehabilitation Research and Training Center on Family Support

This RRTC is conducting a survey about issues related to COVID-19 and its impact on families supporting members with disabilities. The survey covers impacts on employment, financial well-being, social interactions, health behaviors, physical health, and mental health.  It also asks whether anyone in the household has been diagnosed with COVID-19 or are experiencing related symptoms. If you are providing unpaid care to a loved one because of an illness, disability, or functional problem, you will also be asked detailed questions about how COVID-19 has affected your caregiving duties and ability to provide quality care.  These answers will also be extremely helpful in designing programs to help caregivers during this difficult time.  Your responses will inform professionals and policy makers who are designing programs and interventions to help people cope with this serious public health crisis. 

Rehabilitation Research and Training Center on Integrated Healthcare and Self-Directed Recovery

This center creates, modifies, and improves self-directed models of medical care and mental health services that promote recovery, health, and employment for people with psychiatric disabilities. Managing Your Wellness During the COVID-19 Outbreak offers a collection of wellness self-management strategies and resources. Learn how to manage stress, cope with anxiety, combat loneliness, or explore virtual distractions with art, music, museum tours, and more. The collection also includes resources for physical health and wellness, supports for behavioral health providers and other support personnel, and resources to help children, teens, and young adults cope during the outbreak. This center has published a Self-Management Education and Support Referral Algorithm, designed to help primary care providers follow guidelines recommended by the Institute of Medicine to choose a self-management program to meet their patients’ needs at different stages of emotional distress. The algorithm identifies what kinds of knowledge patients need, the self-management programs that provide it, and how to locate these programs in their local communities. Modeled on the American Diabetes Association’s patient education algorithm, the algorithm features peer-delivered self-management programs because of their strong evidence-base and successful use in managing mental health conditions.
Keywords: Psychiatric disabilities, health and wellness, telehealth

University of Alabama at Birmingham Spinal Cord Injury Model System Center (UAB-SCIMS)

UAB-SCIMS conducts research that supports people with SCI, their families, and the rehabilitation professionals who support them. The video Tips for People with SCI During COVID-19 offers tips for individuals to maintain their health and daily living from UAB-SCIMS psychologists. Tips include keeping an eye on secondary conditions to avoid the need for hospital visits, maintaining a routine, getting exercise, and maintaining social contact.
Keywords: Spinal cord injury, health and wellness, community participation

University of Alabama at Birmingham Traumatic Brain Injury Model System Center (UAB-TBIMS)

UAB-TBIMS conducts research supports people with TBI, their families, and the rehabilitation professionals who support them. The video Tips for People with TBI and their Families During COVID-19 offers suggestions for individuals to maintain their health and daily living from two UAB-TBIMS psychologists. Tips include maintaining a routine, staying informed and following recommended prevention guidelines, asking for help, and doing what you can to maintain your physical and mental health like exercise, learning activities, and keeping medications up to date.
Keywords: Traumatic brain injury, health and wellness, community participation

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Preguntas y Respuestas: Noticias Mensuales para la Comunidad de la Discapacidad para Mayo de 2020

Preguntas y Respuestas es un recurso mensual para la Comunidad de la Discapacidad de habla hispana que llena una necesidad de información. La pregunta de este mes es Recientemente tuve una lesión de la médula espinal (LME) y he oído que los exoesqueletos pueden ser beneficiosos para las personas con mi tipo de lesión. Me gustaría aprender más. ¿Qué información, investigación, y recursos están disponibles sobre exoesqueletos? Este número de Preguntas y Respuestas incluye artículos que discuten la investigación colaborativa sobre los exoesqueletos, una visión general centrada en los médicos, los posibles beneficios de salud, un exoesqueleto con una interfaz cerebro-computadora, terapia robótica para la rehabilitación de la marcha, la calidad de vida y condiciones secundarias, las perspectivas de personas con LME, y más. Obtenga más información sobre Preguntas y Respuestas.

Proyectos Financiados por NIDILRR:

El Sistema Modelo sobre la Lesión de la Médula Espinal de Texas (TMSCIS, por sus siglas en inglés) (en inglés) realiza investigaciones innovadoras sobre la lesión de la médula espinal (LME) para mejorar los resultados y avanzar los métodos, procedimientos, y tecnologías de rehabilitación. El TMSCIS colabora con otros centros del Sistema Modelo de LME (SCIMS, por sus siglas en inglés) (en inglés) financiados por el Instituto Nacional sobre la Investigación de Discapacidad, Vida Independiente, y Rehabilitación (NIDILRR, por sus siglas en inglés) (en inglés) para producir proyectos modulares sobre el uso de exoesqueletos en LME, que incluyen la experiencia de personas con LME usando los exoesqueletos en cuatro de los SCIMS y el impacto financiero del uso de exoesqueletos robóticos para la capacitación locomotora después de LME.

El Centro de Investigación de la Ingeniería de Rehabilitación (RERC, por sus siglas en inglés) sobre los Robots Portátiles para la Vida Independiente (en inglés) realiza actividades de investigación y desarrollo que se centran en los robots portátiles para la movilidad independiente y la manipulación. Como parte de estas actividades, el RERC explora el potencial de la estimulación de la médula espinal simultánea para mejorar el uso del exoesqueleto por personas con LME. El RERC también tiene un proyecto de desarrollo que explora la aplicación de un control robótico de admisión como una forma de permitir a los usuarios de un exoesqueleto de las extremidades inferiores a tener un control completo del movimiento de sus piernas.

De la Colección de NARIC:

Los exoesqueletos biónicos se encuentran entre las modalidades de rehabilitación emergentes que afirman proporcionar deambulación funcional, reducir las complicaciones médicas que acompañan a la LME y estimular la plasticidad de las vías motoras después de una LME incompleta. Desafortunadamente, la mayoría de las tecnologías de asistencia de deambulación están limitadas por ineficiencias tales como poner y quitar el dispositivo y un patrón de marcha deficiente. El artículo, Información general centrada en el médico sobre el uso del exoesqueleto biónico después de una lesión de la médula espinal (inglés) (J78226), proporciona una descripción general de los dispositivos disponibles del exoesqueleto biónico y su utilidad para las personas con LME.

El artículo, Perspectivas de personas con lesión de la médula espinal aprendiendo a caminar usando un exoesqueleto motorizado (en inglés) (J81466) discute un estudio que exploró las expectativas y experiencias de adultos con LME aprendiendo a usar el exoesqueleto motorizado ReWalk. Los participantes compartieron sus experiencias de su uso del exoesqueleto y comúnmente expresaron que el exoesqueleto les permitió rendir actividades cotidianas. Los investigadores comparten que el uso de las perspectivas de los usuarios con LME en el diseño y refinamiento de los exoesqueletos ayudará a asegurar que los exoesqueletos sean apropiados para los usuarios.

Enfoque De Investigación:

Los Exoesqueletos Pueden Proporcionar Beneficios de Salud para Personas con Lesiones de la Médula Espinal discute un estudio realizado por los investigadores en los centros del Sistema Modelo sobre la Lesión de la Médula Espinal (SCIMS, por sus siglas en inglés) en Colorado, Georgia, Illinois, y Texas de los terapeutas físicos, y de recreación que estaban capacitados en el uso de exoesqueletos robóticos con los pacientes con LME. Los terapeutas informaron que encontraron varios beneficios y riesgos del uso de exoesqueletos que incluyeron beneficios físicos, como resistencia mejorada; beneficios psicológicos, como la participación en más actividades; y riesgos como las caídas y lesiones por presión en la piel por el contacto repetido con el exoesqueleto. Los investigadores notaron que la futura investigación puede ser útil para examinar las fortalezas y limitaciones de los exoesqueletos a medida que la tecnología mejora.

Tecnología:

El artículo, El exoesqueleto innovador que ayudó a un hombre paralizado a mover sus cuatro extremidades con el estímulo mental (BBC), discute la historia de un hombre que recibió implantes cerebrales que lo ayudarían a controlar un exoesqueleto. Los implantes leen su actividad cerebral y los transmite a una computadora, donde un software sofisticado lee las ondas cerebrales y las convierte en instrucciones para controlar el exoesqueleto. El autor nota que este exoesqueleto innovador ayudó al hombre a mover sus extremidades; sin embargo, tiene limitaciones, tales como el peso del exoesqueleto siendo prohibitivo para la plena independencia.

Rehabilitación:

El artículo, La terapia robot con el exoesqueleto H2 para la rehabilitación de la marcha en pacientes con lesión de la médula espinal incompleta: Una experiencia clínica (Rehabilitación), discute un estudio para evaluar la aplicabilidad clínica de un nuevo modelo de exoesqueleto robótico en la rehabilitación de la marcha en personas con LME incompleta. Los investigadores analizaron la aparición de eventos indeseables y las percepciones de dolor, fatiga, y comodidad de los pacientes. Descubrieron que el exoesqueleto era seguro, sin efectos indeseables y con buena tolerancia del paciente.

Calidad de Vida:

El artículo, Examinando los efectos de un exoesqueleto motorizado en la calidad de vida e impedimentos secundarios en personas viviendo con lesión de la médula espinal (en inglés) (Rehabilitación Mayor de Lesiones de la Médula Espinal), discute un estudio que exploró los cambios en condiciones de salud secundarias que pueden resultar del uso de un exoesqueleto motorizado, así como su impacto potencial en la calidad de vida. Los investigadores encontraron que, después de usar el exoesqueleto, los participantes habían disminuido la espasticidad y el dolor; sin embargo, no hubo cambios en el manejo del intestino y la vejiga. Los hallazgos de este estudio sugieren que el uso de un exoesqueleto motorizado puede disminuir la espasticidad en personas con LME y sugieren que, aunque hay mejoramientos en las condiciones secundarias, el uso de un exoesqueleto motorizado no resulta en una mejora significante en la calidad de vida.

Recursos:

Ayuda Financiera:

Más Investigaciones:

REHABDATA:

PubMed:

Investigaciones Internacionales:

Más información sobre Preguntas y Respuestas

Cada mes, revisamos las búsquedas que aparecen en nuestro blog y a través de las solicitudes de información hechas por nuestros clientes que hablan español y elegimos un tema que llena la necesidad mayor. Cada recurso mencionado anteriormente está asociado con la necesidad de información de este mes. Buscamos varios recursos y fuentes de noticias en español durante todo el mes para traerle estos artículos. Con la excepción de los Proyectos de NIDILRR, De la Colección de NARIC, y Más Investigaciones, todos los enlaces a los artículos y recursos se encuentran en español.

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Answered Questions: Monthly News for the Disability Community for May 2020

Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. This month’s question is: I recently had a spinal cord injury (SCI) and have heard that exoskeletons can be beneficial to people with my type of injury. I would like to learn more. What information, research, and resources are available on exoskeletons? This edition of Answered Questions includes items that discuss collaborative exoskeleton research, a clinician-focused overview, possible health benefits, an exoskeleton with a brain-computer interface, robot therapy for gait rehabilitation, quality of life and secondary conditions, the perspectives of people with SCI, and more. More about Answered Questions.

NIDILRR-Funded Projects:

The Texas Model Spinal Cord Injury System (TMSCIS) (English) conducts innovative spinal cord injury (SCI) research to improve outcomes and advance rehabilitation methods, procedures, and technologies. The TMSCIS collaborates with other SCI Model System (SCIMS) centers (in English) funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) (in English) to produce module projects on exoskeleton use in SCI, which include the experiences of people with SCI using robotic exoskeletons at four of the SCIMS and the budgetary impact of robotic exoskeleton use for locomotor training after SCI.

The Rehabilitation Engineering Research Center (RERC) on Wearable Robots for Independent Living (English) conducts research and development activities that are focused on wearable robots for independent mobility and manipulation. As part of these activities, the RERC explores the potential of simultaneous spinal cord stimulation to improve exoskeleton use by people with SCI. The RERC also has a development project that explores the application of robotic admittance control as a way of allowing users of a lower extremity exoskeleton to have complete control over the movement of their legs.

From the NARIC Collection:

Bionic exoskeletons are among the emerging rehabilitation modalities that claim to provide functional ambulation, reduce medical complications accompanying SCI, and stimulate plasticity of motor pathways after incomplete SCI. Unfortunately, the majority of ambulation assistive technologies are limited by inefficiencies such as putting on and taking off the device and poor gait pattern. The article, Clinician-focused overview of bionic exoskeleton use after spinal cord injury (English) (J78226), provides an overview of current available bionic exoskeleton devices and their utility for people with SCI.

The article, Perspectives of people with spinal cord injury learning to walk using a powered exoskeleton (English) (J81466), discusses a study that explored the expectations and experiences of adults with SCI learning to use the ReWalk powered exoskeleton. The participants shared their experiences of their use of the exoskeleton and they commonly expressed that the exoskeleton allowed them to perform everyday activities. The researchers share that using the perspectives of users with SCI in the design and refinement of exoskeletons will help ensure that exoskeletons are appropriate for users.

Research In Focus:

Robotic Exoskeletons May Provide Health Benefits for People with Spinal Cord Injuries discusses a study conducted by researchers at the Spinal Cord Injury Model System (SCIMS) centers in Colorado, Georgia, Illinois and Texas of physical, exercise, and recreational therapists who were trained in the use of robotic exoskeletons with patients with SCI. The therapists reported that they found several benefits and risks of exoskeleton use that included physical benefits, such as improved endurance; psychological benefits, such as participation in more activities; and risks such as falling and skin sores from repeated contact with the exoskeleton. The researchers noted that future research may be useful to examine the strengths and limitations of exoskeletons as the technology evolves.

Technology:

The article, The innovative exoskeleton that helped a paralyzed man move his four limbs with mental stimuli (BBC), discusses the story of a man with SCI who received brain implants that would assist him in controlling an exoskeleton. The implants read his brain activity and transmit them to a computer, where a sophisticated software reads the brain waves and converts them into instructions for controlling the exoskeleton. The author notes that this innovative exoskeleton helped the man move his limbs; however, it has limitations, such as the weight of the exoskeleton being prohibitive to full independence.

 Rehabilitation:

The article, Robot therapy with the H2 exoskeleton for gait rehabilitation in patients with incomplete spinal cord injury: A clinical experience (Rehabilitación), discusses a study to evaluate the clinical applicability of a new robotic exoskeleton model in the gait rehabilitation of people with an incomplete SCI. Researchers analyzed the appearance of undesirable events and the patients’ perceptions of pain, fatigue, and comfort. They found that the exoskeleton was safe, without undesirable effects, and with good patient tolerance.

Quality of Life:

The article, Examining the Effects of a Powered Exoskeleton on Quality of Life and Secondary Impairments in People Living with Spinal Cord Injury (English) (Top Spinal Cord Injury Rehabilitation), discusses a study that explored changes in secondary health conditions that may result from using a powered exoskeleton as well as their potential impact on quality of life. The researchers found that, after using the exoskeleton, participants had decreased spasticity and pain; however, there were no changes in bowel and bladder management. The findings of this study suggest that the use of a powered exoskeleton may decrease spasticity in people with SCI and suggest that, although there were improvements in secondary conditions, the use of a powered exoskeleton did not result in a significant improvement in quality of life.

Resources:

Financial Assistance:

Further Research:

REHABDATA:

PubMed:

International:

About Answered Questions

Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned above is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects, From the NARIC Collection, and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be c

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Mental Health Awareness Month

Mental Health Awareness Month, was established in 1948 by Mental Health America (formerly National Association for Mental Health) to raise awareness and educate the public about mental illness, living with these conditions, and strategies for maintaining mental health and wellness. Mental health organizations such as Mental Health America (MHA), National Alliance on Mental Illness (NAMI), and Anxiety and Depression Association of America (ADAA) raise awareness, provide resources and tools, to be connected, and breaking the stigma of mental illness.

Approximately 1 in 5 Americans will experience mental illness during their lifetime, but everyone faces challenges in life that can impact their mental health. The coronavirus pandemic (COVID-19) has presented new challenges for those living with severe mental illness and/or substance abuse disorders, and even individuals without lived experience in mental illness may be experiencing anxiety, depression, and feelings of social isolation at this time.

There are tools and resources available to help people find support and connect to their community. Here are examples from the three national organizations:

MHA’s Tools2Thrive Toolkit (#Tools2Thrive) includes sample materials for communications and social media as well as printable handouts on several topics including:

  • Owning Your Feelings
  • Finding the Positive
  • Eliminating Toxic Influences
  • Creating Healthy Routines
  • Supporting Others
  • Connecting with Others

NAMI’s “You are Not Alone” campaign (#NotAlone) features the lived experience of people affected by mental illness fighting stigma, inspiring others with lived experience, and educating the broader public. The campaign builds connection and increases awareness with digital tools that make connection possible during a climate of physical distancing. Individuals with lived experience are encouraged to share their experiences. The campaign also features statistical fact sheets and infographics on a variety of topics including: Why mental health matters, mental health warning signs, taking charge of your mental health, and information on mental health conditions and treatment and services.

ADAA’s mental health month campaign focuses on breaking the stigma (#BreakTheStigma) associated with anxiety, depression, and related co-occurring disorders by sharing lived experiences to inspire and support others facing similar challenges. The ADAA provides information on understanding anxiety and depressive mental health conditions as well as statistical data, resources for treatment and support, and tips for helping friends and relatives who may be experiencing mental health challenges. Many individuals may be experiencing anxiety and depressive symptoms for the first time due to the coronavirus pandemic—ADAA also offers resources and tips for dealing with “coronavirus anxiety.

Local affiliates of these organizations may have events and resource available to help people in their communities. Visit their websites or call your local Community Resource Specialists to find out what’s happening in your area.

If you are struggling or in suicidal, emotional distress or crisis please reach out for help through the National Suicide Prevention Lifeline at 800/273-8255 (V), and 800/799-4889 (TTY).

The above information and resources are also available in Español on their respective organizational websites.

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Mes de Concientización sobre la Salud Mental

El Mes de Concientización sobre la Salud Mental fue establecido en 1948 por Salud Mental América (anteriormente Asociación Nacional para la Salud Mental) para crear conciencia y educar al público sobre la enfermedad mental, las personas viviendo con estas condiciones, y las estrategias para mantener la salud mental y bienestar. Las organizaciones sobre la salud mental como Salud Mental América (MHA, por sus siglas en inglés) (en inglés), la Alianza Nacional sobre la Salud Mental (NAMI, por sus siglas en inglés), y la Asociación de América de Ansiedad y Depresión (ADAA, por sus siglas en inglés) (en inglés) crean conciencia, proveen recursos e instrumentos para estar conectado y romper el estigma de la salud mental.

Aproximadamente 1 en 5 estadounidenses experimentará una enfermedad mental (en inglés) durante su vida, pero todos enfrentan desafíos en la vida que pueden impactar su salud mental. La pandemia de coronavirus (COVID-19, por sus siglas en inglés) ha presentado nuevos desafíos para aquellas personas viviendo con enfermedad mental grave y/o trastornos de abuso de sustancias, y hasta las personas sin experiencia vivida en la enfermedad mental pueden estar experimentando ansiedad, depresión, y sentimientos de aislamiento social en este tiempo.

Hay instrumentos y recursos disponibles para ayudar a las personas a encontrar apoyo y conectar con su comunidad. Aquí nombramos ejemplos de tres organizaciones nacionales:

El Conjunto de Instrumentos “Tools2Thrive” (en inglés) (#Tools2Thive) de MHA incluye una muestra de materiales para las comunicaciones y redes sociales, así como folletos imprimibles sobre varios temas incluyendo:

  • Poseer tus sentimientos
  • Encontrar lo positivo
  • Eliminar las influencias toxicas
  • Creando rutinas sanas
  • Apoyar a otros
  • Conectarte con otros

La campaña “No estás solo” (en inglés) (#NotAlone) de NAMI destaca la experiencia vivida de personas afectadas por la enfermedad mental luchando contra el estigma, inspirando a otros con experiencia vivida, y educando al público en general. La campaña desarrolla la conexión y aumenta la conciencia con instrumentos digitales que hacen posible la conexión durante un clima de distancia física. Las personas con experiencia vivida están alentadas a compartir sus experiencias (en inglés). La campaña también destaca hojas informativas (en inglés) e infografías (en inglés) de estadísticas sobre una variedad de temas, incluyendo: Porqué la salud mental es importante, señales de advertencia de salud mental, hacerse cargo de su salud mental, e información sobre las condiciones de salud mental y el tratamiento y servicios.

La campaña sobre el mes de salud mental de la ADAA se centra en romper el estigma (en inglés) (#BreakTheStigma) asociado con la ansiedad, depresión, y trastornos concurrentes relacionados al compartir las experiencias vividas (en inglés) para inspirar y apoyar a otros que enfrentan desafíos similares. La ADAA brinda información para comprender las condiciones de salud mental depresivas y de ansiedad (en inglés), así como los datos estadísticos, recursos para el tratamiento y apoyo (en inglés), y consejos para ayudar a los amigos y las relaciones que pueden estar experimentando desafíos de salud mental. Muchas personas pueden estar experimentando síntomas de ansiedad y depresión por primera vez por la pandemia de coronavirus – la ADAA también ofrece recursos y consejos para enfrentar la “ansiedad de coronavirus” (en inglés).des

Los afiliados locales de estas organizaciones pueden tener eventos y recursos disponibles para ayudar a las personas en sus comunidades. Visita sus sitios web o llama a sus Especialistas en Recursos Comunitarios locales (en inglés) para encontrar lo que está pasando en tu área.

Si tienes dificultades o estás sufriendo crisis suicidas o de angustia emocional, solicita ayuda a través de la Línea Nacional de Prevención del Suicidio al 800/273-8255(V) y al 800/799-4889(TTY).

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What is Lupus?

According to the Mayo Clinic, lupus is a systematic autoimmune disease that occurs when a person’s immune system attacks their own tissues and organs. Lupus may be difficult to diagnose because the signs and symptoms for lupus may mimic those of other illnesses; however, the most distinctive sign of lupus is a rash on the face that looks like the wings of a butterfly are unfolding across a person’s cheeks. Lupus can be very different in each person: some are born with a tendency toward developing lupus, while others develop it due to various reasons such as infections, medications, and even sunlight; symptoms may come suddenly for one person, but develop slowly for someone else; may be mild or severe, and may be temporary or permanent. The signs and symptoms of lupus that a person may experience depend on which body systems are affected. Currently, there is no cure for lupus. There are, however, treatments that can help a person with lupus control their symptoms.

Would you like to learn more? Our information specialists searched the NARIC Collection and found over 600 articles related to lupus that include international research. They also searched the NIDILRR Program Database and found several current and completed NIDILRR-funded projects focused on lupus. Finally, they searched NARIC’s Knowledgebase to find organizations that work with people with lupus. If you have questions or need assistance in searching NARIC’s databases, please contact NARIC’s information specialists.

Please note: Please contact your doctor if you develop an unexplained rash, ongoing fever, persistent aching or fatigue.

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¿Qué es lupus?

Según la Clínica Mayo, el lupus es una enfermedad autoinmune sistemática que ocurre cuando el sistema inmune de una persona ataca sus propios tejidos y órganos. Lupus puede ser muy difícil de diagnosticar debido a que los signos y síntomas para lupus pueden imitar los de otras enfermedades; sin embargo, el signo más distintivo de lupus es un salpullido en la cara que se parece a las alas de una mariposa que se está desplegando en las mejillas de una persona. Lupus puede ser muy diferente en cada persona: algunos nacen con una tendencia a desarrollar lupus, mientras que otros lo desarrollan debido a varias razones como infecciones, medicamentos, e incluso la luz del sol; los síntomas pueden aparecer repentinamente para una persona, pero desarrollarse lentamente para otra persona; puede ser leve o grave y puede ser temporal o permanente. Los signos y síntomas de lupus que una persona puede experimentar dependen en que sistemas corporales son afectados. Actualmente, no hay cura para el lupus. Hay, sin embargo, tratamientos que pueden ayudar a una persona con lupus a controlar sus síntomas.

¿Quieres obtener más información? Nuestros especialistas en información buscaron la colección de NARIC y encontraron más de 600 artículos relacionados con lupus (en inglés) que incluyen la investigación internacional. También buscaron la Base de Datos del Programa de NIDILRR y encontraron varios proyectos financiados por NIDILRR actuales y completados centrados en lupus (en inglés). Finalmente, buscaron la Knowledgebase de NARIC para encontrar organizaciones que trabajan con personas con lupus (en inglés). Si tienes preguntas o necesitas ayuda en buscar las bases de datos de NARIC, comunícate con los especialistas en información de NARIC.

Tenga en cuenta: Comunícate con tu médico si desarrollas una erupción cutánea inexplicable, fiebre continua, dolor persistente, o fatiga.

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Global Accessibility Awareness Day – Building an Inclusive Digital World

May 21st is the ninth annual Global Accessibility Awareness Day, a day to get everyone talking, thinking, and learning about digital access, inclusion, and people with disabilities. More than 1 billion people are living with disabilities worldwide and digital inclusion is more important than ever. In addition, due to the current pandemic, much of our learning, working, socializing, and even healthcare are happening online. Even before the pandemic, access to government programs and financial services like banking had transitioned to online in many communities. If these websites, platforms, and portals are inaccessible, it means that 1 billion students, clients, patients, or customers will be left out.

Building an inclusive digital world starts with understanding how people with disabilities use information and communication technologies, from email to the Internet of Things, how these technologies support their independence and community participation, and what barriers or challenges they encounter in using technology every day. Several NIDILRR-funded Rehabilitation Engineering Research Centers (RERCs) are focusing on these very issues:

RERC on Universal Interface and Information Technology Access.

This RERC addresses access to inclusive information and communication technologies (ICT) for people with disabilities. ICTs are an integral part of life, impacting education, employment, health, transportation, and social communication; however, as ICTs continue to evolve (e.g., digital technologies) access for individuals with disabilities may become prohibitive. Among their current projects are:
EZ Access – a simple set of interface enhancements (tactile and software) which can be applied in the design of electronic products and devices such as touchscreen kiosks so that they can be used by more people including those with disabilities.
Morphic – an extension to the operating system that makes computers easier to use, particularly for those who have trouble using the computer. This includes people who need to adjust the computer (font size, contrast, etc.), those who have trouble finding and using features in the computer, those who find the computer too complex or confusing, and those who need special software of any kind.

RERC on Wireless Inclusive Technologies

The mission of the Wireless RERC is to integrate established wireless technologies with emerging wirelessly connected devices and services for a transformative future where individuals with disabilities achieve independence, improved quality of life, and enhanced community participation. Project goals include: (1) creating and promoting inclusive wireless technologies that improve the ability of individuals with disabilities to independently perform activities of their choice now, and in a fully-engaged and all-inclusive future; and (2) working with industry, government, and disability stakeholders to raise awareness and champion adoption of accessible solutions for wirelessly connected technologies. Visit the Wireless RERC to learn about:
Annual survey of user needs. How people with disabilities use wireless technologies, what they use it for, and the benefits and challenges.
Wireless connected devices including wearables and auditory assistive device development.

RERC on Information and Communication Technology (ICT) Access for Community Living, Health, and Function

This center promotes ICT access to existing and emerging technologies for all people regardless of ability and develops and validates ICT applications to improve the capacity for independent living and community participation. Among its activities, this center supports software and hardware developers in developing and releasing their proposals for assistive devices and accessibility apps as well as apps that support the health and function of people with disabilities.
Learn more about the App Factory and the host of apps and tech in production or soon to be available.

RERC: Develop and Evaluate Rehabilitation Technology and Methods for Individuals with Low Vision, Blindness, and Multiple Disabilities

The goal of this center is to impact numerous current barriers to opportunity faced by individuals who are blind, have low vision, and have multiple disabilities. Among its projects, the Center develops new tools for accessing graphics such as a tactile graphics helper and sonification cues for computer screen readers, new tools for accessing devices and appliances with digital displays, and tools and techniques to access careers and interests in science, technology, engineering, and mathematics (STEM) by consumers who are blind.
Check out this center’s Accessible Pandemic Data Bulletin which uses sonified data displays and the t-Scratch Tangible Programming Environment targeted for students who are blind or visually impaired.

RERC on Technologies to Support Aging-in-Place for People with Long-Term Disabilities (TechSAge RERC II)

This center aims to advance knowledge and accelerate the development, modification, and testing of technology-based interventions and strategies for use in the home and community to promote aging-in-place and reduce secondary conditions among people with long-term disabilities. Learn how digital assistants, smart bathrooms, telewellness, and other technologies can help people maintain their independence, stay engaged in their communities, and stay safe at home.

These are just a few projects working to build an inclusive digital world. Learn more about the research and development projects funded each year by NIDILRR by searching the Program Database and reading summaries of recent studies in our Research In Focus series. You can also explore peer reviewed literature, original research reports, and more in our REHABDATA index of disability and rehabilitation research. Contact our information specialists if we can help you explore this topic!

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Día Mundial de Concientización sobre la Accesibilidad – Desarrollando un Mundo Digital Inclusivo

El 21 de mayo es el noveno Día anual Mundial de Concientización sobre la Accesibilidad (en inglés), un día para que todos hablen, piensen, y aprendan sobre el acceso digital, la inclusión, y las personas con discapacidades. Más de mil millones de personas están viviendo con discapacidades en todo el mundo y la inclusión digital es más importante que nunca. Además, gracias a la crisis de salud actual, mucho de nuestro aprendizaje, trabajo, socialización, y hasta la atención médica está ocurriendo en línea. Incluso antes de la pandemia, el acceso a los programas gubernamentales y servicios financieros, como bancario, habían hecho la transición a la web en muchas comunidades. Si estos sitios web, plataformas, y portales son inaccesibles, esos son mil millónes de estudiantes, clientes, o pacientes que pueden quedar fuera o sean dejados atrás.

Desarrollar un mundo digital inclusivo comienza con comprender cómo las personas con discapacidades usan las tecnologías informáticas y de comunicación, desde el correo electrónico hasta el Internet de Cosas, cómo estas tecnologías apoyan su independencia y participación comunitaria, y qué barreras o desafíos ellos pueden enfrentar en usar la tecnología cada día. Varios Centros de Investigación de la Ingeniería de Rehabilitación (RERC, por sus siglas en inglés) financiados por NIDILRR (en inglés) están centrándose en estos temas:

RERC sobre la Interfaz Universal y Acceso a la Tecnología Informática (en inglés).
Este RERC aborda el acceso a las tecnologías informáticas y de comunicación (TIC) inclusivas para personas con discapacidades. Las TIC son una parte integral de la vida, que impactan la educación, empleo, salud, transportación, y comunicación social; sin embargo, a medida que las TIC continúan evolucionando (por ejemplo, tecnologías digitales), el acceso para personas con discapacidades puede volverse prohibitivo. Entre sus proyectos actuales están:

  • EZ Access” (en inglés) – un conjunto simple de mejoras de interfaz (táctiles y software) que se pueden aplicar en el diseño de productos y dispositivos electrónicos, como los quioscos de pantalla táctil, para que puedan ser utilizados por más personas, incluyendo las personas con discapacidad.
  • Morphic” (en inglés) – una extensión del sistema operativo que hace que las computadoras sean fáciles de usar, particularmente para aquellos que tienen problemas para usar la computadora. Esto incluye a las personas que necesitan ajustar la computadora (tamaño de letra, contraste, etc.), aquellos que tienen problemas para encontrar y usar funciones en la computadora, aquellos que consideran que la computadora es demasiado compleja o confusa, y aquellos que necesitan un software especial de cualquier tipo.

RERC sobre las Tecnologías Inalámbricas Inclusivas (en inglés).
La misión del RERC Inalámbrico es integrar las tecnologías inalámbricas establecidas con los dispositivos y servicios conectados inalámbricamente emergentes para un futuro transformativo donde las personas con discapacidades logran la independencia, mejorada calidad de vida, y la participación comunitaria aumentada. Los objetivos del proyecto incluyen: (1) la creación y promoción de tecnologías inalámbricas inclusivas que mejoran la capacidad de personas con discapacidades a rendir actividades de forma independiente de su elección ahora, y en un futuro totalmente comprometido y todo incluido; y (2) trabajar con personas interesadas de la industria, del gobierno, y de discapacidad para crear conciencia y abogar por la adopción de soluciones accesibles para las tecnologías conectadas inalámbricamente. Visite el RERC Inalámbrico para obtener información sobre:

  • La encuesta anual de necesidades de usuarios (en inglés). Cómo las personas con discapacidades usan las tecnologías inalámbricas, para qué lo usan, y los beneficios y desafíos.
  • Los dispositivos conectados inalámbricamente incluyen el desarrollo de dispositivos portátiles y de asistencia auditora.

RERC sobre el Acceso a la Tecnología Informática y de Comunicación (TIC) para la Vida Comunitaria, Salud, y Función (en inglés).
Este centro promueve el acceso a TIC para las tecnologías existentes y emergentes para todas las personas, independientemente de su capacidad, y desarrolla y da validez a las aplicaciones de las TIC para mejorar la capacidad de vida independiente y la participación comunitaria. Entre sus actividades, este centro apoya a los desarrolladores de software y hardware en desarrollar y publicar sus propuestas para los dispositivos de asistencia y las aplicaciones de accesibilidad, así como las aplicaciones que apoyan la salud y función de personas con discapacidades. Obtenga más información sobre la “App Factory” y un conjunto de aplicaciones y tecnología en producción o que pronto estará disponible (en inglés).

RERC: Desarrollar y Evaluar la Tecnología y Métodos de Rehabilitación para Personas con Baja Visión, Ceguera, y Múltiples Discapacidades (en inglés).
El objetivo de este centro es impactar varias barreras actuales a la oportunidad enfrentadas por personas que son ciegas, que tienen baja visión, y múltiples discapacidades. Entre sus proyectos, el Centro desarrolla nuevos instrumentos para obtener acceso a las gráficas como el ayudante de gráficas táctiles y señales sonificadas para los lectores de pantallas de computadoras, nuevos instrumentos para obtener acceso a los dispositivos y aplicaciones con pantallas digitales, e instrumentos y técnicas para obtener acceso a las carreras e intereses en la ciencia, tecnología, ingeniería y matemáticas (STEM, por sus siglas en inglés) por los consumidores que son ciegos. Consulte el Boletín de Datos de Pandemia Accesibles (en inglés) de este centro que utiliza pantallas sonoras de datos y el Entorno de Programación Tangible “t-Scratch” (en inglés) de este centro dirigido a estudiantes ciegos o con discapacidad visual.

RERC sobre las Tecnologías para Apoyar el Envejecimiento-en-el-Lugar para Personas con Discapacidades a Largo Plazo (TechSAge RERC II) (en inglés).
Este centro tiene el objetivo de avanzar el conocimiento y acelerar el desarrollo, la modificación, y las pruebas de intervenciones basadas en la tecnología y estrategias para su uso en el hogar y en la comunidad para promover el envejecimiento-en-el-lugar y reducir las condiciones secundarias entre personas con discapacidades a largo plazo. Obtenga información sobre como los asistentes digitales (en inglés), baños inteligentes (en inglés), y el telebienestar (en inglés), y otras tecnologías pueden ayudar a las personas a mantener su independencia, mantenerse comprometidos en sus comunidades, y mantenerse seguros en el hogar.

Estos son solo unos pocos proyectos que están trabajando para desarrollar un mundo digital inclusivo. Obtenga más información sobre los proyectos de investigación y desarrollo financiados cada año por NIDILRR cuando busca la Base de Datos del Programa y lee los resúmenes de recientes estudios en nuestra serie Enfoque De Investigación. También puede explorar la literatura analizada por colegas, informes de investigación originales, y más en nuestro índice REHABDATA de investigación sobre la discapacidad y rehabilitación. ¡Comuníquese con nuestros especialistas en información si podemos ayudarlo a explorar un tema!

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If you liked… What are Patau Syndrome and Edward Syndrome?

In this post in our series If you liked…, we will update our post What are Patau Syndrome and Edward Syndrome? This particular post is very popular amongst our readers interested in developmental disabilities. Patau and Edward syndromes are very rare types of developmental disorders and research continues in supporting the health and participation of individuals with these syndromes. Parents and families of children with either of these syndromes may find support and assistance through the Support Organization for Trisomy 18, 13, and Related Disorders (SOFT), which also provides resources and professional literature to medical professionals. The International Trisomy 13/18 Alliance provides research publications, informational booklets, and a list of support groups across the world.

If you would like more information or resources in your area relating to Patau syndrome, Edward Syndrome, or any other developmental disability, please contact NARIC’s information specialists by calling 800/346-2742, via email, or by chat.

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Si te gustó… ¿Qué son el síndrome de Patau y el síndrome de Edward?

En esta publicación de nuestra serie Si te gustó…, actualizaremos nuestra publicación ¿Qué son el síndrome de Patau y el síndrome de Edward? Esta publicación particular es muy popular con nuestros lectores interesados en las discapacidades de desarrollo. Los síndromes de Patau y de Edward son tipos muy raros de los trastornos de desarrollo y la investigación continua en apoyar la salud y la participación de personas con estos síndromes (en inglés). Los padres y las familias de niños con estos síndromes pueden encontrar apoyo y asistencia a través de la Organización de Apoyo para Trisomía 18, 13 y Trastornos Relacionados (SOFT, por sus siglas en inglés), que también proporciona recursos y literatura profesional para profesionales médicos. La Alianza Internacional de Trisomía 13/18  (en inglés) proporciona publicaciones de investigación, folletos informativos, y una lista de grupos de apoyo (en inglés) de todo el mundo.

Si deseas obtener más información o recursos en tu área relacionados con el síndrome de Patau, síndrome de Edward, u otra discapacidad de desarrollo, por favor comunícate con los especialistas en información de NARIC al llamar al 800/346-2742, por correo electrónico, o por chat.

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