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.
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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.
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RDLA is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations.
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RDCRN is a network of research consortia that conduct clinical research on rare diseases. They collaborate to advance understanding and treatment of these conditions.
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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.
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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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