We are publishing our newsletter electronically for the first time!

Many organizations have moved away from print newsletters due to the expense involved in printing and mailing. As mentioned in earlier issues, we have elected to continue with a print newsletter for Summer/Fall while using our eblast list to publish a Winter/Spring newsletter electronically. We are also using our eblast list to communicate with you on timely issues so you can expect to hear from us more frequently than in the past.

This enewsletter contains research updates, information about our next Symposium in June 2018, and information about rare disease advocacy and how you can help.

Cambrooke Foods Hosts Local Event

Cambrooke has been doing cooking demonstrations, social meet ups and educational events for patients, their families and the clinician’s that support them for many years.

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Our Story

On April 23 2015, our precious firstborn son Eliyahu Tuvia was born in Jacksonville, FL. All seemed well and we took our bundle of joy home.

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From The Chairman’s Desk

On July the 21st the MSUD Board of Directors traveled to Bethesda, Maryland for our annual Board meeting. We stayed at the Hyatt Regency in Bethesda.

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

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A Child's Life

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