There are several resources for those living with a rare disease, from patient services to wish foundations. If you can’t find what you’re looking for, please email our Family Services Director and we’ll connect you the best we can.
Patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish. The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI).
Patient Services Inc (PSI)
Provides financial support and guidance for qualified patients with specific, rare chronic diseases. PSI is passionate about accessibility to and affordability of treatment. Committed to helping subsidize the costs of health insurance premiums and out of pocket costs (copayments/coinsurance). PSI also offers a variety of legal services free of charge through the PSI-A.C.C.E.S.S. Program for specific rare disease communities. Through PSI assistance programs patients and their families rediscover hope and health.
Helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
Mission is to help cancer patients, families, healthcare professionals and the general public get accurate cancer-related information at no charge.
Mission is to educate, support, serve, and advocate for families of children with cancer, survivors of childhood cancer, and the professionals who care for them.
Supports families of children who have bone marrow illnesses and raises awareness of bone marrow donation.
A nonprofit organization started by a Florida-based FA family. Their mission is to raise funds and awareness toward the goal of finding a cure for Fanconi anemia. Funds raised support the Fanconi Anemia Comprehensive Care Program at the University of Minnesota.
Provides retreats combining respite, recreation, and support, while enabling hope and promoting joy, for children with life-threatening illnesses and their families, through the various stages of a child’s illness.
Founded by an FA family in Texas, A.I.M. Strong, Inc. supports and encourages families who have a child undergoing bone marrow transplant by providing gift cards to assist in offsetting the expenses of relocation and extended hospital stay required for a bone marrow transplant.
Grants wishes to children under the age of 18 with life-threatening illnesses.
Their mission is to bring joy and encouragement through wish granting, to every child who faces a life-threatening illness.
Dedicated to infusing hope, creating happy memories, and improving the quality of life for children having experienced life-altering situations.
Provides children with life-altering medical or social conditions, the opportunity to experience a once in a lifetime outdoor adventure.
Serves terminally-ill adults and their families by providing end-of-life Dreams that offer inspiration, comfort, and closure.
Grants wishes to children with cancer.
Their mission is to facilitate successful transplants of hematopoietic cells from volunteer unrelated donors as life-saving therapy for patients of all racial and socioeconomic backgrounds.
World’s largest marrow donor center with over 6 million registered marrow donors. The mission of DKMS is to give every blood cancer patient a second chance at life by recruiting marrow donors from every race and ethnicity. Potential donors can register free.