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.
Search Engine
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/
Chai Lifeline
Chai Lifeline is an international support network, providing social, emotional, and practical assistance to children, families, and communities impacted by medical crises and trauma through a variety of year-round programs and services.
https://www.chailifeline.org/programs
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/
Heart Brothers House
HeartBrothers House at Church Park Apartments in downtown Boston is dedicated lodging for Heart Failure patients and their families through hospitalization or clinic care. One of the Myhre families recently stayed here on a trip to the Myhre Clinic in Boston. Here is their feedback…
”It’s a large one-bedroom apartment on the 6th floor of a secure building. There’s a parking spot in the garage if you have a car and Whole Foods, CVS, and restaurants on the block. Very comfortable. We would use it again. The only downside is that you have to take a Lyft to the hospital but save money over a hotel at $103/night. It was a short walk to Newbury Street. You do have to have an MGH social worker's contact info for the request, but a cardiologist’s nurse’s info is fine.”
https://www.heartbrothers.org/heartbrothers-house
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)
Special Olympics (Worldwide)
The mission of Special Olympics is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.
https://www.specialolympics.org/
Little League Baseball (USA)
The Little League Challenger Division® was founded in 1989, and is Little League’s adaptive baseball program for individuals with physical and intellectual challenges. Any individual with a physical or intellectual challenge may participate. If an individual can participate in the traditional Little League Baseball or Softball program with reasonable accommodations, they should do so. The Little League Challenger Division accommodates players ages 4 to 18; or up to age 22 if still enrolled in school. The Senior League Challenger Division accommodates players ages 15 and above (no maximum age).
https://www.littleleague.org/play-little-league/challenger/
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, Wellness & Connections (Worldwide)
Best Buddies
Best Buddies International is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, inclusive living, and family support for individuals with intellectual and developmental disabilities (IDD).
https://www.bestbuddies.org/
YoungLife Capernaum
Inviting teens and young adults with and without disabilities to discover authentic friendship, growth, and purpose.
https://capernaum.younglife.org/
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/
Food & Practical Support
Lasagne Love
In 2020, prompted by the COVID-related struggles of families in her community and her own feeling of helplessness, she founded Lasagna Love. A platform that connects neighbors for home-cooked meal delivery, Lasagna Love has transformed into an international movement of kindness, impacting thousands of volunteers and recipient families each week.
https://lasagnalove.org/
Specialized Safety Bed
In 1995, Patrick and Barbara were denied help from their insurance company to obtain a specialized bed for their daughter. Feeling helpless but remaining diligent in providing her with a safe place to sleep, Patrick and Barbara began the design of their daughter’s new bed. With determination, resilience, and a fierce desire to keep their daughter safe, the Courtney Bed evolved.
https://courtneybed.com/