Nationwide Rare Disease Resources
Resources available to rare disease patients, families, caregivers, and advocates across the United States.
Nationwide Resources
95 resources
| Resource | Audience | Services / Notes | Website |
|---|---|---|---|
| #RAREis | Patient and caregiver | Social: #RAREis highlights the stories of people navigating life with a rare disease, supporting a loved one, and advocating for a change in the rare disease community. You can also share your own story. | Visit website → |
| ABLE National Resource Center | Patient and caregiver | Financial, Resources: ABLE NRC shares reliable information about ABLE plans including plan comparisons, best practices, and strategies to increase savings for now and into the future. | Visit website → |
| Accessia Health | Patient and caregiver | Financial: Accessia Health provides financial assistance with copays, health insurance premiums, travel costs, and other medical expenses to people with rare and chronic medical conditions. | Visit website → |
| accessibleGO | Patient and caregiver | Recreation, Financial: This travel platform provides accessibility information for everything travel related and has easy filters to search by accomodation. They also help locate travel discounts for people with disabilities. | Visit website → |
| Air Care Alliance | Patient and caregiver | Resources: Air Care Alliance will help find a qualified medical transportation organization and connect you to them. | Visit website → |
| America the Beautiful—the National Parks and Federal Recreational Lands Pass | Patient | Financial, Resources, Recreation: The National Park Service offers free passes for adults with permanent disabilities. | Visit website → |
| The Assistance Fund | Patient and caregiver | Financial: The Assistance Fund offers disease specific financial assistance programs. | Visit website → |
| befree | Patient and caregiver | This adaptive clothing website provides clothing for both children and adults. | Visit website → |
| Bernie Pura Vida Fund | Caregiver | Financial, Recreation: The Bernie Pura Vida Fund gives grants so that children with physical disabilities have the opportunity to explore and enjoy the wonders of Costa Rica. | Visit website → |
| Caregiver Action Network | Caregiver | Resources: The Cargiver Action Network provides resources, guides, peer support, and webinars for caregivers. They have specific resources for rare disease caregivers. Contact: info@caregiveraction.org | Visit website → |
| Center for Chronic Illness | Patient | Social: The Center for Chronic Illness offers support groups for anyone impacted by chronic illness and rare disease. The groups are virtual and free to attend. | Visit website → |
| Center for Corageous Kids | Caregiver | Recreation: Center for Courageous Kids (CCK) is a non-profit camp designed to meet every camper’s needs regardless of their medical condition. | Visit website → |
| Center for Parent Information and Resources | Caregiver | Resources, Education: The Center for Parent Information & Resources is a resource hub specifically designed for the network of Parent Centers serving families of children with disabilities. | Visit website → |
| Cherry Blossom Vacations | Caregiver | Recreation, Financial: Cherry Blossom Vacations offers a free stay at a vacation home for families who have adopted, fostered, or have a child with a disability | Visit website → |
| Chive Charities | Patient and caregiver | Financial: Chive Charities provides grants to underserved Veterans, military families, first responders, and rare medical diagnosees. Grants cover medical items, mobility items, and therapy items. | Visit website → |
| Coordination of Rare Diseases at Sanford (CoRD) | Patient and caregiver | Advocacy, Research: CoRDs is the largest free international rare disease registry. It helps connect participants with advocacy groups and researchers. | Visit website → |
| David's Refuge | Caregiver | Recreation: David’s Refuge offers caregivers a weekend respite at partnering bed and breakfast (located in New York). | Visit website → |
| Deliver the Dream | Caregiver | Recreation: Deliver the Dream provides therapeutic programs to families facing a serious illness, crisis or disability. It is based in Florida but has family retreats and free virtual programs for children. | Visit website → |
| Dena DNA | Patient and caregiver | Education: Dena is a certified genetic counselor who makes social media content that explains genetic concepts. | Visit website → |
| Disibility Visibility Project | Patient and caregiver | Education: The Disability Visibility Project is an online community dedicated to creating, sharing, and amplifying disability media and culture. This website publishes articles, advice columns, podcasts, interviews and so much more. | Visit website → |
| The Disorder Channel | Patient and caregiver | Recreation: The Disorder Channel features short films and features, documentaries, narratives, and even some fantasy films and talk show episodes about rare diseases. It can be accessed through Roku or FireTV. | Visit website → |
| Divas With Disabilities | Patient | Advocacy, Social, Resources: Divas With Disabilities is community committed to increasing representation of black and brown women and girls with disabilities. They have conference calls, online group meetings focused on mental health, blogs, and an online magazine. | Visit website → |
| Dream Factory | Caregiver | Recreation, Financial: The Dream Factory is the largest all-volunteer driven children’s wish-granting organization that grants wishes for children with chronic illnesses and disorders. | Visit website → |
| Easterseals | Patient and caregiver | Resources, Recreation: Easterseals provide services to ensure children and adults with disabilities have equal opportunities to live, learn, work, and play. They have local chapters who host a variety of programs such as camps, equine therapy, and assistive technology. | Visit website → |
| EveryLife Foundation | Patient and caregiver | Financial, Advocacy: The EveryLife Foundation for Rare Diseases is a nonprofit organization dedicated to empowering advocacy in the rare disease community. Some of their resources include advocacy toolkits, grants for advocacy travel, and other grants. Contact: info@everylifefoundation.org | Visit website → |
| First Hand Foundation | Caregiver | Financial: First Hand Foundation offers pediatric medical grants to help cover essential expenses—including clinical care, medical equipment, and travel-related costs. | Visit website → |
| Friends of Man | Patient and caregiver | Financial: Friends of Man offers grants for mobility equipment, prosthetics, home modifications, medical equipment, hearing aids, basic needs and much more. However, a referal from a professional (caseworkers, case managers, healthcare workers, social workers, school counselors, teachers, clergy) is required. | Visit website → |
| Genetic Alliance | Patient and caregiver | Resources: ***Genetic Alliance is a nonprofit organization that engages individuals, families and communities to transform health by influencing policies, empowering and enabling communities, and building practice and useful tools and resources. offers a program that diagnoses undiagnosed diseases for free. Contact: info@geneticalliance.org | Visit website → |
| Global Genes | Patient and caregiver | Resources, Social: Global Genes is committed to providing information, resources and connections to all communities affected by rare diseases. They have RARE Concierges to contact for information, a rare disease community group, and educational resources for rare diseases. Contact: Patient Services link: https://globalgenes.tfaforms.net/5029224 Advocacy inquiry email: GAA@globalgenes.org | Visit website → |
| Good Days | Patient and caregiver | Financial: Good Days offers disease specific financial assistance programs. | Visit website → |
| Home Remodeling for People with Disabilities: What You Need to Know (Article) | Patient and caregiver | Education: This article covers what you need to know when remodeling a home for accessibility reasons. | Visit website → |
| iCanShine | Patient and caregiver | Recreation: iCan Shine provides bike, dance, and swim programs for individuals with disabilities. | Visit website → |
| Icing Smiles | Caregiver | Recreation: Icing Smiles is a nationwide nonprofit organization that delivers dream cakes at no charge to kids impacted by critical illness. (And to their siblings, too!) | Visit website → |
| Inclusive Exercise | Patient and caregiver | Education: Inclusive Exercise has a list of accessible home exercise videos. | Visit website → |
| Laughing At My Nightmare | Patient and caregiver | Financial: Laughing At My Nightmare grants for assisstive technology and emergency financial assistance for unexpected disability-related expenses | Visit website → |
| Lexigene | Patient and caregiver | Resources, Education: Lexigene provides translations for genetic terms in English, Spanish, and French. | Visit website → |
| Librarey | Patient and caregiver | Resources: Librarey is a search tool that helps rare disease and disability communities discover and share resources. | Visit website → |
| List of Adaptive Clothing Sites | Patient and caregiver | Resources: New Hampshire Family Voices created this list of adaptive clothing and shoe websites. | Visit website → |
| List of Common Genetic Terms and Acronyms | Patient and caregiver | Education: This list explains common genetic terms and acronyms in a way that is easy to understand. | Visit website → |
| List of Groups Providing Charitable Flights | Patient and caregiver | Resources: This is a directory created by Air Care Alliance that lists all the American organizations that provide charitable flights. | Visit website → |
| List of Photographers Trained to Take Amazing Photos of People With All Abilities | Patient and caregiver | Resources: Hearts & Lens provides training on how to get the best results in both posed and candid photographic sessions with persons of all abilities. This llist provides the names and locations of all the photographers who have completed the training. | Visit website → |
| List of Wheelchair Van Grants By State | Patient and caregiver | Financial, Resources: BraunAbility has created a list of grants for wheelchair vans separated by state. | Visit website → |
| McLindon Family Foundation | Caregiver | Financial, Recreation: The McLindon Family Foundation provides adaptive bikes to children and young adults with disabilities. | Visit website → |
| Medicine Assistance Tool | Patient and caregiver | Financial: PhRMA’s Medicine Assistance Tool (MAT) is a search engine for biopharmaceutical companies that offer patient assistance programs/discounts. | Visit website → |
| Medline Plus: Help Me Understand Genetics | Patient and caregiver | Education: This website uses plain and understanable language to help people understand human genetics. Contact: Subsidiary of NIH | Visit website → |
| Miracle Flights | Patient and caregiver | Financial: Miracle Flights provides commercial plane tickets to all U.S.-based medical treatment facilities at no cost to families. Contact: communications@miracleflights.org | Visit website → |
| My Family Health Portrait | Patient and caregiver | Resources: This tool was developed by the Surgeon General and can be used to create a pedigree (family tree) that you can give to healthcare professionals. | Visit website → |
| MyGene2 | Patient and caregiver | Social, Research: MyGene2 is a portal through which families with rare genetic conditions who are interested in publicly sharing health and genetic information can connect with other families, clinicians, and researchers. Contact: mygene2@uw.edu | Visit website → |
| National Black Disability Coalition | Patient and caregiver | Advocacy, Resources: National Black Disability Coalition addresses disability issues in both the greater Black community and the greater disability community. Their website has scholarships, attorney consultations, online educational programs, "Supporting One Another" podcast, and more. | Visit website → |
| National Disability Rights Network | Patient and caregiver | Advocacy, Education, Resources: National Disability Rights Network advocates for laws protecting the civil and human rights of all people with disabilities. They have podcasts and articles that cover current events and issues surrounding disability rights. | Visit website → |
| National Genetics Education and Family Support Center | Patient and caregiver | Resources: The National Genetics Education and Family Support Center provides easy to understand information about human genetics, genetic diseases, and genetic medical services. Contact: mmartzke@expectinghealth.org | Visit website → |
| National Organization for Rare Diseases (NORD) | Patient and caregiver | Advocacy, Resources, Financial, Education: NORD provides a variety of support and tools for people with rare diseases and their loved ones. They have everything from patient assistance programs to rare disease registries for research. Contact: Site: https://rarediseases.org/email-nord/ | Visit website → |
| Native American Disablility Law Center | Patient and caregiver | Advocacy, Resources, Education: The Native American Disability Law Center is a private nonprofit organization that advocates for the legal rights of Native Americans with disabilities. They offer resources, educational videos, guides to navigating disability and guides to enrolling in benefits programs. | Visit website → |
| Needy Meds | Patient and caregiver | Financial: Needy Meds connects people to programs that will help them afford their medications and other healthcare costs. | Visit website → |
| On Rare Podcast | Patient and caregiver | Education: In this podcast, people with rare diseases and rare disease experts discuss the challenges and triumphs of life with a rare genetic condition. Contact: patientadvocacy@bridgebio.com David Rintell, head of patient advocacy at BridgeBio, and Mandy Rohrig, associate director of patient advocacy at BridgeBio Gene Therapy. | Visit website → |
| Once Upon A Gene: Podcast | Caregiver | Education: Once Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. | Visit website → |
| Oracle Health Foundation | Caregiver | Financial: Oracle Health Foundation provides pediatric grants that cover a wide variety of clinical, equipment, travel, lodging, and vehicle modification costs related to children’s healthcare needs. | Visit website → |
| Our Odyssey | Patient | Social: Our Odyssey connects young adults impacted by rare or chronic conditions through accessible & inclusive social experiences. While there aren't any events scheduled at the moment, their Discord is still active. | Visit website → |
| PAN (Patient Access Network) Foundation | Patient and caregiver | Financial: The PAN Foundation offers disease specific financial assistance programs. | Visit website → |
| Parent to Parent USA | Caregiver | Social: Parent to Parent USA connect parents who face similar challenges in raising their children with disabilities or special health care needs. | Visit website → |
| Parents Helping Parents | Caregiver | Education, Resources, Social: This website helps parents find support, information, and training for parents and their loved ones. Services include 1:1 consultations (by appointment), support groups, neighborhood offices, webinars, videos, resource directory, and more. | Visit website → |
| Partnership for Patient Assistance | Patient and caregiver | Resources: Partnership for Patient Assistance connects patients with appropriate assistance programs based on their needs and eligibility. | Visit website → |
| PATH Parents of Children with Special Needs Support Group (Facebook) | Caregiver | Social: This is a Facebook support group for parents of children with special needs. | Visit website → |
| PATH Siblings Support Page (Facebook) | Social: This is a Facebook support group for siblings of children with special needs. | Visit website → | |
| Patient Advocate Foundation | Patient and caregiver | Financial, Advocacy, Education: Patient Advocate Foundation (PAF) provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses | Visit website → |
| Patient Worthy | Patient | Education: Patient Worthy® is an online publication that provides relevant information to rare disease patients, caregivers and advocates alike. They publish articles written by people with rare diseases and produce a rare disease podcast called WAIT, HOW DO YOU SPELL THAT?. | Visit website → |
| Project Angel Fares | Caregiver | Recreation, Financial: Project Angel Fares provides families who have a child with a disability or special need the opportunity to visit and enjoy the ultra-accessible theme parks in San Antonio, Texas. | Visit website → |
| Ramp Your Voice | Patient | Advocacy, Education: Ramp Your Voice is an annual conference centered on Black disabled people. Recordings of previous conferences are available to watch. | Visit website → |
| Rare and Ready: A Genetic Coalition | Patient and caregiver | Resources, Advocacy: Rare and Ready advocates for policy changes to Medicaid programs to improve treatment access for rare diseases. They have advocacy tools to use when reaching out to representatives and a place for people to publicly share their Medicaid story. | Visit website → |
| Rare Care Podcast | Patient and caregiver | Resources: This podacst interviews patients, healthcare providers, and researchers within the rare disease community. | Visit website → |
| Rare Disease CareLine (Patient Advocate Foundation) | Patient and caregiver | Resources, Education: Patient Advocate Foundation’s Rare Disease CareLine provides free and confidential navigational assistance with financial and practical challenges that impact your ability to access healthcare. | Visit website → |
| Rare Genomes Project | Patient and caregiver | Research: The Rare Genomes project is for patients with rare and genetically undiagnosed condition as well as their family. Eligible patients and family can join a patient-driven research study focused on discovering the genes involved in their family's rare disease. | Visit website → |
| Rare Genomics Institute (RG Patient Research Services) | Patient and caregiver | Social: RG Patient Research Services (RGPRS) aims to advance research for some of the most challenging rare diseases by sharing patient information with researchers. RareWear is a program that connects rare disease patients to medical device providers who offer free devices. | Visit website → |
| Rare Parenting | Caregiver | Education: Rare Parenting is an online publication that offers scientifically backed guidance for parents of children with rare diseases and complex medical needs. | Visit website → |
| Rare Patient Voice | Patient and caregiver | Rare Patient Voice gives patients and caregivers an opportunity to voice their opinions through surveys and interviews to improve medical products and services. Contact: ContactUs@RarePatientVoice.com | Visit website → |
| Rare Revolution Magazine | Patient and caregiver | Education: RARE Revolution is an independent publishers dedicated to elevating the voice of the rare disease community through its magazine, online presence, disease awareness campaigns, patient engagement projects and social media. Contact: hello@rarerevolutionmagazine.com | Visit website → |
| Rare360.life | Patient and caregiver | Social, Education: Rare360.life is a community-based news platform dedicated to the topic of rare disease. The website provides news briefs, editorials, and more. | Visit website → |
| RareShare | Patient and caregiver | Social, Education: RareShare is an unique social hub that connects rare disease patients, families, research organizations, and healthcare professionals. The website is built on a premise that sharing information is good, especially when it comes to information about rare diseases. | Visit website → |
| Ray Tye Medical Aid Foundation | Patient and caregiver | Financial: The Ray Tye Medical Aid Foundation is dedicated to funding in-hospital life saving medical treatment and surgeries for those who do not have medical insurance, and for which no other financial resources are available | Visit website → |
| Reading Frame | Patient and caregiver | Education: Reading Frame offers free virtual books about having a genetic disease. | Visit website → |
| RUN (Rare and Undiagnosed) | Patient and caregiver | Advocacy: RUN seeks to empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support. There is an informational blog and a list of rare disease resources. Contact: ginaszajnuk@gmail.com | Visit website → |
| Sing Me A Story | Caregiver | Recreation: Sing Me a Story gives children in need the opportunity to write and illustrate stories about anything they want. The stories are sent to songwriters and musicians who turn them into songs. | Visit website → |
| SIRUM | Caregiver | Resources: This website helps redistribute unused medications. | Visit website → |
| Sociedad Hispana de Enfermedades Raras (Hispanic Society for Rare Diseases) | Patient and caregiver | Resources, Education, Research: Sociedad Hispana de Enfermedades Raras promotes public awareness about rare diseases and provides information and resources in Spanish. They have informational articles and podcasts in Spanish. | Visit website → |
| Sunshine Foundation | Caregiver | Recreation: This national wish-granting organization answers the dreams or wishes of children with life-long chronic illnesses or conditions. Families must have limited income to participate. | Visit website → |
| Talking Glossary of Genomic and Genetic Terms | Patient and caregiver | Education: The glossary features nearly 250 terms explained in an easy-to-understand way by leading scientists and professionals at the National Human Genome Research Institute. | Visit website → |
| This Boy We Made | Caregiver | Education: This Boy We Made: A Memoir of Motherhood, Genetics, and Facing the Unknown is a book written by mother of a child with a rare disease. | Visit website → |
| Transgender Law Center (TLC) Disability Project | Patient and caregiver | Advocacy, Education: The Disability Project magnifies the leadership, collective power, and analysis of marginalized disabled, Deaf, ill, and Mad communities. Sign up for their newseltter or follow them on instagram to learn more. | Visit website → |
| Triage Health | Patient and caregiver | Resources, Advocacy: Triage Health provides free education on the legal and practical issues related to navigating a chronic or serious medical condition. This website has a search feature for locating local resources. | Visit website → |
| UCP (United Cerebral Palsy) | Patient and caregiver | Resources, Education, Advocacy: UCP provides help for people of all disabilities. They have local chapters with family resource centers. | Visit website → |
| UnitedHealthcare Children's Foundation | Caregiver | Financial: UnitedHealthcare Children’s Foundation provides medical grants for children with medical expenses not covered, or not fully covered, by their family’s commercial health insurance. | Visit website → |
| Variety: The Children's Charity | Caregiver | Financial: Variety: the Children’s Charity provides grants for medical equipment, mobility aids, healthcare, and education. They don't have a chapter in New England, but you can contact the charity directly. | Visit website → |
| Wheel the World | Patient and caregiver | Resources, Recreation: This tavel site helps you find accessible hotels, activities, transport, and rentals. They also have accessibility verified destinations and customized recommendations. | Visit website → |
| Wheelchairs 4 Kids | Caregiver | Financial: Wheelchairs 4 Kids provides wheelchairs, home and vehicle modifications, as well as other therapeutic equipment to children that have limited mobility. | Visit website → |
| Wonders Within Reach | Patient and caregiver | Resources, Recreation, Education: Wonders Within Reach is a blog focused on traveling with a child with disabilities. The tips and articles can also be used for accessibility info for adults with disabilities. | Visit website → |
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