Welcome to our Rare Disease Resources hub, where you'll find a wealth of information and insights about organizations, institutions, and companies dedicated to making a difference in the world of rare diseases. In this section, we provide brief descriptions of each resource, summarizing their vital roles in research, advocacy, and support for individuals living with rare conditions. Whether you're seeking knowledge about groundbreaking research initiatives or innovative pharmaceutical advancements, this page is your gateway to discover the invaluable contributions of these remarkable entities. For more in-depth information, simply click on the organization or company of interest to learn about their mission, ongoing projects, and the impact they're making within the rare disease community.
Global Genes is an advocacy organization that seeks to empower the rare disease community. They offer educational resources,grants, support, and awareness campaigns.
Learn More
EveryLife Foundation is dedicated to advancing the development of rare disease treatments and supporting the rare disease community. They advocate for policies that benefit rare disease patients and provide resources for financial support.
Learn More
RDLA is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations.
Learn More
RDCRN is a network of research consortia that conduct clinical research on rare diseases. They collaborate to advance understanding and treatment of these conditions.
Learn More
EURORDIS is a non-governmental patient-driven alliance of rare disease organizations in Europe. They work to improve the quality of life for people living with rare diseases.
Learn More
The Rare Disease Foundation, based in Canada, supports rare disease research, patient and family programs, and advocacy efforts.
Learn More
ORDR is part of the NIH and is dedicated to advancing research and awareness of rare diseases. They provide information on rare diseases and research opportunities.
Learn More
RareConnect is an online platform that connects rare disease patients and caregivers with others facing similar challenges. It offers a supportive community and information.
Learn More
NOAH is a support network for individuals with albinism and related conditions. They offer information, advocacy, and community for those affected by these rare genetic disorders.
Learn More
While cystic fibrosis is a relatively common genetic disorder, the Cystic Fibrosis Foundation is dedicated to advancing research, care, and advocacy for those affected by this condition.
Learn More
The National MPS Society provides support and advocacy for individuals and families affected by mucopolysaccharidoses (MPS) and related disorders.
Learn More
The Alport Syndrome Foundation supports research and provides information and resources to those living with Alport syndrome, a rare genetic kidney disease.
Learn More.png)
NTSAD provides support, information, and advocacy for families affected by Tay-Sachs, Sandhoff, GM1, and Canavan diseases, which are rare genetic disorders.
Learn More
National Gaucher foundation supports individuals and families affected by Gaucher disease, a rare genetic disorder that affects various organs and systems.
Learn More
FARA is dedicated to advancing research and providing support for those affected by Friedreich's ataxia, a rare neurodegenerative disorder.
Learn More
The Tuberous Sclerosis Alliance supports individuals and families affected by tuberous sclerosis complex, a rare genetic disorder that causes tumors to form in many organs.
Learn More
The Ehlers-Danlos Society provides support, education, and resources for individuals with Ehlers-Danlos syndromes, a group of connective tissue disorders.
Learn More
The Progeria Research Foundation is dedicated to finding treatments and a cure for progeria, a rare genetic condition that causes rapid aging in children.
Learn More
National Fabry Disease Foundation supports individuals and families affected by Fabry disease, a rare genetic disorder that affects various organs.
Learn More
The Huntington's Disease Society of America provides support and resources for individuals and families affected by Huntington's disease, a rare neurodegenerative disorder.
Learn More
Little People of America is a support and advocacy organization for individuals with dwarfism and their families.
Learn More
Myotonic Dystrophy Foundation supports research and provides resources for individuals and families affected by myotonic dystrophy, a rare genetic muscle disorder.
Learn More
The National PKU Alliance is dedicated to improving the lives of individuals with phenylketonuria (PKU), a rare genetic disorder that affects the metabolism of amino acids.
Learn More
The Hemophilia Federation of America advocates for individuals with hemophilia, a rare bleeding disorder, and provides support and education.
Learn More
The Lowe Syndrome Association supports individuals and families affected by Lowe syndrome, a rare genetic disorder that affects the eyes, brain, and kidneys.
Learn More
National Ataxia Foundation provides support, information, and advocacy for individuals and families affected by ataxia, a group of rare neurological disorders that affect coordination and balance.
Learn More
This foundation supports individuals and families affected by urea cycle disorders, a group of rare genetic metabolic disorders.
Learn More
NNPDF is dedicated to supporting individuals and families affected by Niemann-Pick disease, a group of rare genetic disorders that affect lipid metabolism.
Learn More
Hope for HIE provides information, resources, and support for families affected by HIE, a rare brain injury that occurs during or shortly after birth.
Learn More
Multiple System Atrophy Coalition supports individuals and families affected by multiple system atrophy (MSA), a rare neurodegenerative disorder.
Learn More
The Children's Tumor Foundation is dedicated to finding effective treatments for neurofibromatosis, a rare genetic disorder that causes tumors to grow on nerves.
Learn More
CureDuchenne focuses on finding a cure for Duchenne muscular dystrophy, a rare genetic disorder that leads to muscle weakness and degeneration.
Learn More
AAMDSIF provides support and information for individuals and families affected by aplastic anemia, myelodysplastic syndromes (MDS), and related bone marrow failure diseases.
Learn More
The Pulmonary Hypertension Association is dedicated to improving the lives of individuals with pulmonary hypertension, a rare condition that affects the blood vessels in the lungs.
Learn More
Fanconi Anemia Research Fund supports individuals and families affected by Fanconi anemia, a rare genetic disorder that can lead to bone marrow failure and cancer.
Learn More
IWSA provides support, information, and advocacy for individuals with WAGR syndrome, a rare genetic disorder that includes a combination of features.
Learn More
The Les Turner ALS Foundation supports individuals and families affected by amyotrophic lateral sclerosis (ALS), a rare neurodegenerative disease.
Learn More
PRISMS is dedicated to supporting individuals with Smith-Magenis syndrome and advancing research on this rare genetic disorder.
Learn More
CASANA provides support and resources for families affected by childhood apraxia of speech, a rare speech disorder that affects a child's ability to speak.
Learn More
PAF provides financial aid to patients with rare diseases, helping with copayments, insurance premiums, and related costs.
Learn More
Good Days offers financial support and copay assistance for individuals with chronic and rare diseases, helping them afford their medications and treatments.
Learn More
National Fabry Disease Foundation supports individuals and families affected by Fabry disease, a rare genetic disorder that affects various organs.
Learn More.jpg)
Our giving program is a cornerstone of our mission, dedicated to supporting rare disease patients and underserved communities. We wholeheartedly welcome the support of generous individuals, organizations, and companies who share our commitment to making a positive impact. Through direct donations, sponsorships, and volunteer engagement, our giving program provides crucial assistance to families caring for a loved one affected by a rare disease. Caring for someone with a rare disease can be immensely challenging, and your support through our program bridges the gap between those in need and those with the resources to make a difference, fostering a sense of community and shared responsibility.
iGive
