Support Organizations
Here is a list of resources for adults and children with rare diseases. Just so you know, MSF has not personally reviewed the organizations, so we cannot provide an endorsement. We’d encourage you to contact them and find out more. Please let us know if you have initiatives or groups to add to this list.
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Librarey (Worldwide)
Where rare disease families find and share resources, including support and services.
https://www.librarey.com/
Wish-Granting Organizations (Worldwide)
Dreams Come True (UK)
Fulfills the dreams of children and young adults with serious illnesses across the UK, offering a range of experiences and trips.
https://www.dreamscometrue.uk.com/
Starlight Children's Foundation (Australia)
Provides wishes, hospital programs, and fun activities for seriously ill children and young adults in Australia.
https://www.starlight.org.au/
Ray of Sunshine Children's Charity (Ireland)
Grants wishes to children and young adults with serious or life-threatening illnesses in Ireland.
https://www.rayofsunshine.ie/
Make-A-Wish International
Operates in nearly 50 countries around the world, granting wishes to children with critical illnesses, offering experiences such as trips, meetings with celebrities, or special events.
https://worldwish.org/
Children’s Wish Foundation International
Fulfills wishes for children with life-threatening illnesses globally, providing memorable experiences and trips.
http://www.childrenswish.org/
Starlight Children’s Foundation Global
Improves the quality of life for seriously ill children and their families through hospital programs, fun activities, and special trips.
https://www.starlight.org/
Little Heroes Foundation (Australia)
Supports children living with cancer and serious illness, offering unique experiences and support services.
https://www.littleheroesfoundation.com.au/
SeriousFun Children’s Network (Global)
Offers camp experiences and programs for children with serious illnesses around the world, providing fun and medically safe environments.
https://www.seriousfunnetwork.org/
Icing Smiles
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!)
https://www.icingsmiles.org/
Heart Heroes - Request a Cape (US)
A Heart Hero is a child with Congenital Heart Disease, CHD. Heart Heroes have exceptional strength because of their CHD. If you have a Heart Hero in your life, or are one yourself, we would be honored if you would wear a Heart Hero Cape.
https://heartheroes.org/request-a-cape/
Wish-Granting Organizations (Adults)
Dream Foundation
Fulfills the final wishes of terminally ill adults, providing joy and comfort through memorable experiences.
https://www.dreamfoundation.org/
HopeKids (Adults Programs)
While primarily for children, some chapters and programs extend their services to young adults and families, offering special outings and events. Please reach out to them to inquire.
https://www.hopekids.org/
Accessible Travel Agencies (Worldwide)
Accessible Travel Netherlands
Specializes in accessible travel for individuals with disabilities, offering custom travel experiences in the Netherlands and beyond.
https://accessibletravelnl.com/
Disabled Travelers (Global)
Provides travel resources and information for travelers with disabilities, including accessible accommodations and transportation options worldwide.
http://www.disabledtravelers.com/
Accessible Journeys
An agency specializing in travel planning for individuals with disabilities, ensuring accessible accommodations and activities.
https://www.disabilitytravel.com/
Flying Wheels Travel
Provides travel services for people with disabilities, including planning special trips and ensuring accessibility needs are met.
https://www.flyingwheelstravel.com/
PALS (US)
Patient AirLift Services is a nonprofit that arranges free flights for medical patients requiring medical diagnosis, treatment or follow-up who cannot afford or are unable to fly commercially.
https://palservices.org/
Travel and Adventure Programs (Worldwide)
Travel for All
Specializes in accessible travel for individuals with disabilities and medical conditions, helping to plan and facilitate trips tailored to unique needs.
https://www.travelforall.com/
Adventure and Sports Organizations (Worldwide)
International Wheelchair and Amputee Sports Federation (IWAS)
Organizes sports and adventure activities for individuals with physical disabilities worldwide, promoting active lifestyles and international competitions.
https://www.iwasf.com/
Disabled Sports USA
Provides adaptive sports opportunities for individuals with disabilities, including those with rare diseases, offering adventure trips and sports events.
https://www.disabledsportsusa.org/
Outward Bound Veterans (Including Adults with Disabilities)
Offers adventure programs for veterans and adults with disabilities, focusing on outdoor experiences and personal growth.
https://www.outwardbound.org/
Health and Wellness Retreats (Worldwide)
Cancer Support Community
While primarily focused on cancer, many of their retreats and wellness programs are open to individuals with other life-threatening illnesses, providing respite and holistic care.
https://www.cancersupportcommunity.org/
Gilda’s Club (Various Locations)
Offers support and social events for individuals with serious illnesses, including special trips and wellness retreats.
https://www.gildasclubnyc.org/
Camp Sunshine
Provides retreats and experiences for children with life-threatening illnesses and their families, offering fun activities and support.
https://www.campsunshine.org/
Hole in the Wall Gang Camp
Offers camp experiences for children with serious illnesses, providing a safe and fun environment for various activities.
https://www.holeinthewallgang.org/
The Painted Turtle
A camp for children with serious medical conditions, offering a variety of activities and programs tailored to their needs.
https://www.thepaintedturtle.org/
Camp Korey
Provides camp experiences for children with serious medical conditions, offering recreational activities and support in a medically safe environment.
https://www.campkorey.org/
Victory Junction
Offers camp experiences for children with serious illnesses, providing a fun and medically safe environment for various activities.
https://www.victoryjunction.org/
Grants and Financial Assistance (Worldwide)
Global Genes
Provides resources and support for rare disease patients and advocates globally, including financial assistance and grants for various needs.
https://globalgenes.org/
EURORDIS Rare Diseases Europe
Offers advocacy, support, and funding opportunities for rare disease patients and organizations across Europe, helping to improve access to care and resources.
https://www.eurordis.org/
Rare Voices Australia
Advocates for Australians living with rare diseases, providing resources, support, and information about available grants and assistance programs.
https://www.rarevoices.org.au/
Patient Advocate Foundation’s Co-Pay Relief Program
Offers financial assistance for medical expenses, which can sometimes be used towards travel for medical or therapeutic purposes.
https://www.patientadvocate.org/
UnitedHealthcare Children’s Foundation (UCHF)
Provides medical grants to help pay for medical expenses not covered by insurance, which may include travel for medical treatment or special experiences.
https://www.uhccf.org/