In a time when searching for quality health information can be like searching for a needle in a haystack, Genetic Alliance is thrilled to announce the launch of its newest public resource, Genes in Life is a user-friendly resource for anyone interested in genetics and health which harmonizes many existing resources and tools in a one-stop source for general information related to health and genetics services. On, individuals and families can learn how and why to collect a family health history and share it with a healthcare provider; understand the differences between various types of genetic testing and services, and figure out which genetics professionals to consult. The site will also host interactive features including blog campaigns encouraging comments and discussion as well as an “ask the experts” page, allowing users to request more information about the topics they care most about. Check us out at

For more information on, please contact Rachel Koren at This email address is being protected from spambots. You need JavaScript enabled to view it..

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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I want to help out, but I don’t know how

Have you ever wanted to help out the MSUD Family Support Group but were unsure about how to contribute? The MSUD Family Support Group is actively looking for volunteers to assist with advocacy and fundraising efforts.

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In the 2016 survey of the membership of the MSUD Family Support Group, research for improved treatments and potential cure was rated “most important” by 90% of the responding members.

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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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In The Professional Journals

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

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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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A Child's Life

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