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.
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.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
