Genetic Alliance transforms health through genetics and its network includes more than 1,000 disease-specific advocacy organizations as well as thousands of universities, private companies, government agencies, and public policy organizations. The network is a dynamic and growing open space for shared resources, creative tools, and innovative programs. Through its work, Genetic Alliance brings together diverse stakeholders to create novel partnerships in advocacy, integrates individual, family, and community perspectives to improve health systems and revolutionizes access to information to enable translation of research into services and individualized decision-making.

On December 7 - 8, 2009 Genetic Alliance hosted the Newborn Screening Summit: Envisioning a Future for Newborn Screening in Bethesda, MD. More than 200 health professionals, family members, and others participated in the summit to discuss how long-standing state public health programs can evolve to keep up with new technology, societal and governmental trends, and medical advances. “This meeting provided a wonderful opportunity to visualize the newborn screening system from the point of view of many stakeholders. Working together we can provide the support the entire system needs,” said Sharon Terry, President and CEO of Genetic Alliance. The meeting was webcast live, and the videotaped proceedings as well as more information can be accessed at:

NBS-MSUD Connect: Advancing MSUD Research And More


Rare disease registries have received attention in recent years because of the many ways in which they can benefit the rare disease community.

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MSUD Advocacy Update

Healthcare and issues facing the rare disease community have been at the forefront of national conversations over the past 6 months.

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Sweet Odyssey

Artur Santos was born on January 18, 2002, the second son of Soraya and Idario Santos. They never imagined how their lives were about change as the second baby arrived.

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From The Editor

Hello to my MSUD family! The power of this family hit home this summer, when Hannah (Classic MSUD age 23 years) and I visited Israel.

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As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

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In The Professional Journals

A Patient with MSUD: Acute Management with Sodium Phenylacetate/Sodium Benzoate and Sodium Phenylbutyrate

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A Child's Life

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