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.
IWSA provides support, information, and advocacy for individuals with WAGR syndrome, a rare genetic disorder that includes a combination of features.
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The Les Turner ALS Foundation supports individuals and families affected by amyotrophic lateral sclerosis (ALS), a rare neurodegenerative disease.
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PRISMS is dedicated to supporting individuals with Smith-Magenis syndrome and advancing research on this rare genetic disorder.
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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.
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PAF provides financial aid to patients with rare diseases, helping with copayments, insurance premiums, and related costs.
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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.
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