International Rare Disease Day is February 28^th. The event brings attention to disorders that affect a small percentage of the population. Though the conditions may be rare, the families who live with these disabilities face some of the same challenges as people with more common disabilities. These include accessing benefits and services, finding technology solutions, advocating for full inclusion and participation in the community, and finding support. We’ve assembled some resources from the NIDILRR grantee community and elsewhere which may help in facing these challenges.

Accessing benefits and services

Benefit programs, from financial support to employment training and placement, may be available to people with rare disorders and their caregivers.

• Local Independent Living Centers (ILCs) may have benefits counselors on staff who can help in identifying and applying for federal, state, and local resources. They can also connect you to support groups, local events, and other community resources. ILCs are run by and for people with disabilities and may serve more than one county. Look up the nearest ILC to you.
• The Rehabilitation Research and Training Center on Family Supports conducts research and training on families providing care to individuals with disabilities and the organizations and agencies that support them. They offer a wealth of research to help families advocate for full support and participation, such as Understanding the benefits of paid leave for family caregivers.
• Benefits.gov is used by millions of people every month to search for financial and program benefits available from federal and state governments.

Finding technology solution

Some rare disorders can include mobility, sensory, or cognitive limitations which can be supported by assistive technology (AT).  

• The AbleData database lists more than 40,000 AT products and manufacturers, as well as do-it-yourself AT solutions. If you’re not sure what to look for, start by browsing the listings by product category.
• State Assistive Technology projects connect people with disabilities to technology solutions, including financial resources to support their purchase. Find your state’s project.

Advocating for inclusion

People with rare disorders may find themselves advocating for access and inclusion, from parents advocating for their children to be included in school to individuals fighting to remove physical barriers in their community.

• The ADA National Network of regional centers assists people with disabilities and public and private entities to understand their rights and responsibilities under the Americans with Disabilities Act (ADA) and related civil rights laws. Calling 800/949-4232 (4ADA) will connect you to the nearest regional center.
• Young people with rare disorders who are planning for college or other postsecondary education can learn about their rights to request accommodations to succeed in school through the Access to Success program.
• At work, try the Mobile Accommodations Solution from the Job Accommodation Network. Employers and employees can use the tool to identify accommodations, make and track requests, and support an inclusive workplace. Available for Android and iOS.
• Individuals with rare disorders who are or want to become parents can turn to the National Research Center for Parents with Disabilities for information about their rights as parents, tips from experienced parents and grandparents with disabilities, and videos and articles about parenting with a disability.
• The Research and Training Center on Independent Living offers many resources to help you become a strong advocate for change in your community, from factsheets to training kits.

Finding support online

Families facing common disorders and disabilities like multiple sclerosis, autism, or spinal cord injury have large organizations they can turn to for support, information, and even financial resources. Many families living with rare disorders may find that there is no national organization supporting their specific community. The National Institutes of Health Genetic and Rare Diseases Information Center offers an excellent article on how to find support online and what to look for in a reputable resource.

When we receive a request from a family facing a rare disorder, we often recommend seeking online communities where people with common interests can find each other. In addition to searching common platforms like Facebook or Reddit, these organizations offer online spaces where communities can gather:

• https://www.rareconnect.org/en
• https://rarediseasefoundation.org/peer-2-peer-resource-network/

Though experiencing a rare disease or disorder can feel isolating, there is help in the community, whether nearby or online. These are just a few examples of resources available to support families living with rare diseases and disorders. Please contact our Information Specialists by phone, email, chat, or Facebook if we can help connect you to the community.