Rare disease resources
Information and organizations to help you on your rare disease journey.
RARE DISEASE RESOURCES
Click on the plus and minus symbols next to the categories in the drop-down menu to explore a variety of rare disease resources and links.
- EveryLife Foundation for Rare Diseases: https://everylifefoundation.org
- EURORDIS – Rare Diseases Europe: https://www.eurordis.org
- Genetic and Rare Diseases (GARD) Information Center: https://rarediseases.info.nih.gov
- Global Genes: https://globalgenes.org
- National Organization for Rare Disorders (NORD): https://rarediseases.org
- Orphanet: https://www.orpha.net
- Rare Diseases International: https://www.rarediseasesinternational.org
- Rare New England: https://www.rarenewengland.org
- Rare Voices Australia:https://rarevoices.org.au
- Librarey: https://www.librarey.com
- AbleVu.com: https://ablevu.com
- Access Adventures: https://www.accessadventures.co.uk
- Accessible Go: https://www.accessiblego.com
- Accessible Travel Forum: https://www.accessibletravelforum.com
- Airbnb Adapted Stays: https://www.airbnb.com/d/adapted
- All Wheels Up: https://www.allwheelsup.org
- Becoming RentABLE: https://www.becomingrentable.com
- Curb Free with Cory Lee: https://curbfreewithcorylee.com
- Disabled Travelers: http://www.disabledtravelers.com
- Flying Wheels Travel: https://www.flyingwheelstravel.com
- Flying with Disability: https://www.flying-with-disability.org
- Global Access Travel: https://www.globalaccesstravel.com
- Handiscover:https://www.handiscover.com
- Mobility International USA (MIUSA): https://www.miusa.org
- Open Doors Organization: https://opendoorsnfp.org
- Planet Abled: https://www.planetabled.com
- Scootaround: https://www.scootaround.com
- Society for Accessible Travel & Hospitality (SATH): https://sath.org
- Special Needs Group / Special Needs at Sea: https://www.specialneedsatsea.com
- Special Olympics: specialolympics.org
- Spin the Globe: https://spintheglobe.net/dir/
- Travel for All: https://www.travel-for-all.com
- Travel with Disabilities and Medical Conditions: tsa.gov/travel/special-procedures
- Wheel the World: https://www.wheeltheworld.com
- Wheelchair Travel: https://wheelchairtravel.org
- Wheelchair Traveling: https://wheelchairtraveling.com
- Adaptive Adventures: https://adaptiveadventures.org
- American Association of Adapted Sports Programs: https://adaptedsports.org
- Angel City Sports: https://www.angelcitysports.org
- Athletes Serving Athletes: athletesservingathletes.org
- BlazeSports America: https://www.blazesports.org
- Challenged Athletes Foundation: https://www.challengedathletes.org
- Dream Adaptive Recreation: https://www.dreamadaptive.org
- Lakeshore Foundation: https://www.lakeshore.org
- Move United: https://www.moveunitedsport.org
- National Ability Center: https://discovernac.org
- National Wheelchair Basketball Association: https://www.nwba.org
- Paralympic Sports Clubs: USOPC: https://www.teamusa.org/US-Para
- Special Olympics: https://www.specialolympics.org
- SportsAbility Alliance: https://sportsability.org
- Team PossAbilities: https://www.teampossabilities.org
- Turnstone Center: https://turnstone.org
- U.S. Adaptive Recreation Center (USARC): https://www.usarc.org
- USTA Wheelchair Tennis: https://www.usta.com/en/home/play/adult-tennis/programs/national/wheelchair-tennis.html
- Wheelchair Sports Federation: https://www.wheelchairsportsfederation.org
- Beyond the Diagnosis: https://www.beyondthediagnosis.org
- Canadian Organization for Rare Disorders (CORD): https://raredisorders.ca
- EveryLife Foundation for Rare Diseases: https://everylifefoundation.org
- EURORDIS – Rare Diseases Europe: https://eurordis.org
- Genetic Alliance: https://geneticalliance.org
- Global Genes: https://globalgenes.org
- Little Lobbyists: https://www.littlelobbyists.org
- National Organization for Rare Disorders (NORD): https://rarediseases.org
- Rare Action Network: https://rareactionnetwork.org
- Rare & Ready: A Genetic Condition Coalition: https://www.rareandready.org
- Rare Disease Legislative Advocates (RDLA): https://rareadvocates.org
- Rare Disease United Foundation: https://rarediseaseunited.org
- Rare Voices Australia: https://rarevoices.org.au
- Citizen Health: https://www.citizen.health
- Mejo: https://www.mymejo.com
- ARCH National Respite Network: https://archrespite.org
- Care 4 the Caregiver: https://care4thecaregivers.org
- CaringBridge: https://www.caringbridge.org
- Caregiver.com: https://caregiver.com
- Caregiver Action Network: https://www.caregiveraction.org/rarecaregivers/
- The Caregiver Space: https://www.thecaregiverspace.org
- CaringInfo: https://www.caringinfo.org
- Family Caregiver Alliance: https://www.caregiver.org
- Give an Hour: https://giveanhour.org/rarecaregivers/
- Lotsa Helping Hands: https://lotsahelpinghands.com
- National Alliance for Caregiving: https://www.caregiving.org
- NORD Respite Program: https://rarediseases.org/patient-assistance-programs/caregiver-respite/
- Raregivers Emotional Journey Map & Guidebook: https://www.raregivers.global
- Rosalynn Carter Institute for Caregivers: https://rosalynncarter.org
- Uplift: Rare Disease Caregiver Services: https://upliftrau.org
- Children’s Miracle Network Hospitals: https://childrensmiraclenetworkhospitals.org
- Ronald McDonald House Charities: https://rmhc.org
- Shriners Hospitals for Children: https://www.shrinershospitalsforchildren.org
- St. Jude Children’s Research Hospital: https://www.stjude.org
- Disabled Children’s Fund: https://www.disabled-child.org
- Easter Seals: https://www.easterseals.com
- Elks Foundation: https://www.elks.org
- First Hand Foundation: https://www.firsthandfoundation.org
- Giving Angels Foundation: https://www.givingangelsfoundation.org
- Gracie’s Hope: https://www.hboinfo.com/hhi/gracies-hope/
- Kiddo’s Clubhouse Foundation: https://www.kiddosclubhousefoundation.org
- Kiwanis Club: https://www.kiwanis.org
- Lions Club International: https://www.lionsclubs.org
- Maggie Welby Foundation: https://www.maggiewelby.org
- My Gym Foundation: https://www.mygymfoundation.org
- Parker’s Purpose: https://www.parkerspurpose.net
- Shriners Hospitals for Children: https://www.shrinershospitalsforchildren.org/shc
- Sunshine Foundation: https://www.sunshinefoundation.org
- United Healthcare Children’s Foundation: https://www.uhccf.org
- Variety – The Children’s Charity: https://www.usvariety.org
- Wheel to Walk Foundation: https://www.wheeltowalk.com
- Wheelchairs 4 Kids: https://www.wheelchairs4kids.org
- Center for Information and Study on Clinical Research Participation (CISCRP): https://www.ciscrp.org
- ClinicalTrials.gov: https://clinicaltrials.gov
- FDA Clinical Trials: https://www.fda.gov/patients/clinical-trials-what-patients-need-know
- Global Genes: https://globalgenes.org
- National Institutes of Health (NIH) Clinical Trials: https://www.nih.gov/health-information/clinical-trials
- National Organization for Rare Disorders (NORD): https://rarediseases.org/clinical-trials
- Patient Advocate Foundation: https://www.patientadvocate.org
- Rare Disease Clinical Research Network (RDCRN): https://www.rarediseasesnetwork.org
- ResearchMatch: https://www.researchmatch.org
- TrialsToday (Boston Children’s Hospital): https://trialstoday.org
- American Association of People with Disabilities (AAPD): https://www.aapd.com
- American Disabilities Act: https://www.ada.gov
- The Arc: https://www.thearc.org
- Bazelon Center for Mental Health Law: https://bazelon.org
- Center for Public Representation: https://www.centerforpublicrep.org
- Disability Rights Education & Defense Fund (DREDF): https://dredf.org
- National Disability Rights Network (NDRN): https://www.ndrn.org
- AbleNet: https://www.ablenetinc.com
- Center for Parent Information and Resources (CPIR): https://www.parentcenterhub.org
- Council for Exceptional Children (CEC): https://exceptionalchildren.org
- Council of Parent Attorneys and Advocates (COPAA): https://www.copaa.org
- Disability Rights Education & Defense Fund (DREDF): https://dredf.org
- Individuals with Disabilities Education Act (IDEA): https://sites.ed.gov/idea
- Learning Disabilities Association of America: https://ldaamerica.org
- National Center for Learning Disabilities (NCLD): https://www.ncld.org
- National Parent Helpline: https://www.nationalparenthelpline.org
- Understood.org: https://www.understood.org
- Wrightslaw (Special Education Law & Advocacy): https://wrightslaw.com
- Rare Disease Day: https://www.rarediseaseday.org
- National Organization for Rare Disorders (NORD) Living Rare, Living Stronger Forum: https://livingrare.org
- EveryLife Foundation Rare Disease Week on Capitol Hill: https://everylifefoundation.org/rare-disease-week
- Rare Across America: https://everylifefoundation.org/rare-advocates/rare-across-america
- Rare-X Rare Disease Awareness Month Events: https://rare-x.org
- International Conference on Rare Diseases & Orphan Drugs: https://crgconferences.com/rarediseases
Accordion Content
- A Kid Again: https://www.akidagain.org
- Believe in Tomorrow Children’s Foundation: https://believeintomorrow.org
- Camp Sunshine: https://www.campsunshine.org
- Dream Factory: https://www.dreamfactoryinc.org
- Give Kids The World Village: https://www.gktw.org
- HopeKids: https://www.hopekids.org
- Lighthouse Family Retreat: https://www.lighthousefamilyretreat.org
- Make-A-Wish Foundation: https://wish.org
- Magic Wheelchair: https://www.magicwheelchair.org
- Never Ever Give Up (NEGU) / Jessie Rees Foundation: https://negu.org
- Paul Newman Foundation: https://newmansown.org/joyful-experiences-for-children-with-serious-illnesses/
- The Sing Me a Story Foundation: http://www.singmeastory.org/
- Tim Tebow Foundation: Night to Shine: timtebowfoundation.org/ministries/night-to-shine
- Special Spaces: https://www.specialspaces.org
- Sunshine Foundation: https://www.sunshinefoundation.org
- Victory Junction: https://victoryjunction.org
- Achieving a Better Life Experience Accounts: irs.gov/government-entities/federal-state-local-governments/able-accounts-tax-benefit-for-people-with-disabilities
- Acessia Health: https://accessiahealth.org
- CancerCare: cancercare.org/copayfoundation
- Children’s Defense Fund: https://www.childrensdefense.org
- Co-Pay Relief: https://www.copays.org
- Good Days: mygooddays.org
- Family Reach: https://www.familyreach.org
- HealthWell Foundation: https://www.healthwellfoundation.org
- Kidswaivers: Kidswaivers.org
- Medicaid: medicaid.gov
- Medication Assistance Program (NeedyMeds): https://www.needymeds.org
- National Association of State Medicaid Directors (NASMD): https://medicaiddirectors.org
- NORD Patient Assistance: https://rarediseases.org/patient-assistance-program/
- Patient Advocate Foundation: https://www.patientadvocate.org
- Patient Access Network Foundation: https://www.panfoundation.org
- Social Security: ssa.gov/disability
- The Assistance Fund: https://tafcares.org
- ACL.gov: https://acl.gov
- American Association of People with Disabilities (AAPD): https://www.aapd.com
- Americans with Disabilities Act (ADA) – U.S. Department of Justice ADA Information: https://www.ada.gov
- The Arc: https://www.thearc.org
- Benefits: benefits.gov
- Center for Parent Information and Resources: https://www.parentcenterhub.org
- Centers for Medicare & Medicaid Services (CMS): https://www.cms.gov
- Children’s Health Insurance Program (CHIP): https://www.insurekidsnow.gov
- Consortium for Citizens with Disabilities (CCD): http://www.c-c-d.org
- Council for Exceptional Children (CEC): https://exceptionalchildren.org
- Developmental Disabilities Council (Find your state’s DDC): https://nacdd.org
- Disability Rights Group (National Disability Rights Network): https://www.ndrn.org
- Family Voices: https://familyvoices.org
- Federation for Children with Special Needs: https://fcsn.org
- Home Modification Information Network State Policies: https: //homemods.org/
- Kids Waivers: https://www.kidswaivers.org
- Medicaid and CHIP (Children’s Health Insurance Program): https://www.medicaid.gov
- The National Center on Birth Defects and Developmental Disabilities (NCBDDD): https://www.cdc.gov/ncbddd/index.html
- The National Disability Rights Network: https://www.ndrn.org
- National Institutes of Health (NIH): https://www.nih.gov
- National Organization for Rare Disorders (NORD): https://rarediseases.org
- Social Security Administration (SSA) – Disability Benefits: https://www.ssa.gov/disability
- Social Security Disability Benefits (SSI & SSDI): https://www.ssa.gov/disability
- State Assistive Technology Act Technical Assistance and Training Center: https://www.at3center.net
- State Vocational Rehabilitation Agencies: https: //rsa.ed.gov
- U.S. Department of Transportation (DOT) – Disability Rights in Transportation: https://www.transportation.gov/accessibility
- U.S. Department of Health and Human Services (HHS): https://www.hhs.gov
- Behind the Mystery: Rare and Genetic: https://thebalancingact.com/category/behind-the-mystery/
- BioNews Today: https://bionews.com
- Brave Together Podcast: https://www.wearebravetogether.org/podcast
- CheckRare: https://checkrare.com
- The Disorder Channel: https://www.thedisordercollection.com
- Global Genes – RARE Daily: https://globalgenes.org/news
- I Don’t Know How You Do It Podcast: https://www.jessicafeinstories.com/podcast
- Know Rare Blog: https://www.knowrare.com/blog
- The Mighty (Rare Disease Section): https://themighty.com/topic/rare-disease/
- Once Upon A Gene Podcast: https://www.effieparks.com/
- Patient Worthy: https://patientworthy.com
- Raising Rare Podcast: https://www.raisingrare.fm/
- Rare Awareness Radio: https://rareawarenessradio.org
- Rare Care Podcast: https://www.rarediseaseadvisor.com/channels/rare-care/
- RARECast (Global Genes):https://globalgenes.org/rarecast/
- Rare Disease Advisor: https://www.rarediseaseadvisor.com/
- Rare Mamas Rising Podcast: https://raremamas.com/podcast/
- Rare Parenting Magazine: https://www.rareparenting.com
- Rare Revolution Magazine: https://www.rarerevolutionmagazine.com
- The Rare Life Podcast: https://therarelife.org
- The Special Needs Mom Podcast: https://www.kararyska.com/podcast
- Two Disabled Dudes Podcast:https://twodisableddudes.com/
- American Academy of Pediatrics: https://www.aap.org
- American College of Medical Genetics and Genomics (ACMG): https://www.acmg.net
- American Medical Association (AMA): https://www.ama-assn.org
- Centers for Disease Control and Prevention (CDC) Rare Diseases: https://www.cdc.gov/rare/index.html
- Child Neurology Foundation: https://www.childneurologyfoundation.org
- Genetic and Rare Diseases Information Center (GARD): https://rarediseases.info.nih.gov
- Global Genes: https://globalgenes.org
- MedlinePlus (NIH): https://medlineplus.gov
- National Organization for Rare Disorders (NORD): https://rarediseases.org
- Orphanet: https://www.orpha.net
- Rare Disease Foundation: https://www.rarediseasefoundation.org
- Assistive Technology Industry Association: https://www.atia.org
- Easterseals: https://www.easterseals.com
- Muscular Dystrophy Association Medical Equipment Grant Program: https://www.mda.org/care/resource-list/equipment-assistance
- National Equipment Leasing Association: https://www.nelaonline.org
- National Mobility Equipment Dealers Association: https://nmeda.org/consumer-resources/
- PPMD Equipment Assistance: https://www.parentprojectmd.org
- United Cerebral Palsy (UCP): https://ucp.org
- UnitedHealthcare Durable Medical Equipment (DME): https://www.uhc.com/health-plans/medicare/durable-medical-equipment
- American Counseling Association: Find a Counselor: counseling.org/aca-community/learn-about-counseling/what-is-counseling/find-a-counselor
- Anxiety and Depression Association of America (ADAA): https://adaa.org
- The Center for Complicated Grief: Grief: complicatedgrief.columbia.edu
- Child Mind Institute: https://childmind.org
- Crisis Text Line: https://www.crisistextline.org
- The Dougy Center: https://www.dougy.org
- Mental Health America: https://mhanational.org
- National Alliance on Mental Illness (NAMI): https://www.nami.org
- National Suicide Prevention Lifeline: https://suicidepreventionlifeline.org
- Psychology Today: https://www.psychologytoday.com
- Psychologist Locator:https://locator.apa.org
- Rare Counseling: https://www.rarecounseling.com
- Rare Minds: https://www.rareminds.org
- A Mother’s Rest: amothersrest.org
- Child Life On Call: https://childlifeoncall.com
- Child Neurology Foundation: https://www.childneurologyfoundation.org
- Courageous Parents Network: https://courageousparentsnetwork.org
- Parent to Parent USA: https://www.p2pusa.org
- Parents Helping Parents: https://www.php.com/rare-diseases-caregiver-support/
- Pathway to Peace: https://www.kararyska.com/pathwaytopeace/
- Rare Mamas: https://www.raremamas.com
- Rare Parenting: https://rareparenting.com
- The Rare Life: https://therarelife.org
- We are Brave Together: https://www.wearebravetogether.org
- Best Buddies: https://www.bestbuddies.org
- Double H Ranch: doublehranch.org
- Friendship Circle: https://www.friendshipcircle.org
- Hole in the Wall Gang Camp: holeinthewallgang.org
- MDA Summer Camp: mda.org/summer-camp
- Morgan’s Wonderland: morganswonderland.com
- Painted Turtle: https://www.thepaintedturtle.org
- Serious Fun Children’s Network: seriousfun.org
- Victory Junction: https://victoryjunction.org
- Center for Family and Childhood Studies: https://siblingsupport.org/about-us/center-for-family-and-childhood-studies
- SibNet: https://www.siblingsupport.org/connect-with-others/sibnet
- SibStrong: https://sibstrong.org
- SibTeen: https://www.siblingsupport.org/connect-with-others/sibteen
- Sibling Support Project: https://siblingsupport.org
- Sibling Leadership Network: https://siblingleadership.org
- Support for Siblings: https://supportforsiblings.com.au
- Air Charity Network:aircharitynetwork.org
- Angel Flight: https://www.angelflight.com
- Children’s Flight of Hope: childrensflightofhope.org
- Children’s Inn at NIH: childrensinn.org
- Mercy Medical Angels: mercymedical.org
- Miracle Flights: https://miracleflights.org
- Patient Airlift Services: palservices.org
- Ronald McDonald House Charities: rmhc.org
- Wings of Hope: wingsofhope.ngo
- Undiagnosed Diseases Network (UDN): https://undiagnosed.hms.harvard.edu
- National Institutes of Health (NIH) Undiagnosed Diseases Program (UDP): https://www.genome.gov/27544402/undiagnosed-diseases-program
- SWAN (Syndromes Without A Name) USA: https://swanusa.org
- SWAN UK: https://www.undiagnosed.org.uk
- Rare & Undiagnosed Network (RUN): https://rareundiagnosed.org
- Genetic and Rare Diseases (GARD) Information Center: https://rarediseases.info.nih.gov
- Think Genetic: https://www.thinkgenetic.com
- Rare Genomes Project: https://www.raregenomes.org