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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: http://www.geneticalliance.org.













Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

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NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

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Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

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Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

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Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

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From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

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MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

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The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

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19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

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Transform

A Child's Life

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