Attendance at Global Genes Rare Patient Advocacy Summit - Association for Creatine Deficiencies

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Attendance at Global Genes Rare Patient Advocacy Summit

September 22, 2016 - September 24, 2016

Attendance at Global Genes Rare Patient Advocacy Summit

Huntington Beach, CA
September 22 – 24, 2016

Global Genes is the leading rare disease advocacy organization with global reach to the worldwide community of rare disease patients, caregivers, advocates, and clinical partners. This conference was the 3rd year that the ACD had attended in Huntington Beach, CA.  Each year the ACD has had the privilege of listening to some of the most well respected medical professionals in the country.   This year was no exception.  We had the opportunity to hear about innovation such as  3D tissue generation.   No, they can’t make a new liver or heart, yet…but they are working on it.  We heard from the NIH and how they are working on trying to house a patient registry that brings different research partners together, and more importantly, the advocacy information.  Collaboration is the key, and without it, a cure for a rare disease moves slower or not at all.  The Global Genes Summit reminds us that we, as a rare disease community, are strongest working together.

Kim and Linda at Global Genes

Linda Cooper and Kim Tuminello

group with ed oneill

Carol Dutch, Ed O’Neill, Linda Cooper, and Bob Cooper


Taylor Hicks, Linda Cooper, and Bob Cooper


September 22, 2016
September 24, 2016
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