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Genetic Alliance Celebrates 20 Years of Excellence in Advocacy

Yesterday I missed a huge event - and it was killing me. I'll blog more about it later when I've got more time, but in the meantime, here's a press release about it. There were several HPS'ers that took part in this event, and Candice and Crystal Sipe (mentioned a few posts ago www.angelsinvoice.com) were honored.


WASHINGTON, Sept. 27 (AScribe Newswire) -- Genetic Alliance brought together today more than 250 advocates, researchers and clinicians in the largest ever celebration of the genetic advocacy community. An exhibit at the National Geographic Society in Washington, D.C., showcased leaders of a variety of organizations -- from little children who have been spokespersons for a disease to founders who have gone on to build research enterprises. The 20th anniversary celebrated an inventive, driven, inspiring community. "We are celebrating the best of the human spirit: the leap across the threshold (and sometimes canyon) from dire and devastating diseases and conditions, to the hope and real promise of support, services, and research," said Sharon Terry, President & CEO.

Joan Weiss, a social worker, founded genetic Alliance in 1986. "Now, 20 years later, I feel extremely gratified that those leaders who continued to believe in the original mission of Genetic Alliance -- to encourage a true partnership among families, professionals and researchers -- have seen this mission fulfilled," Joan Weiss, who was in attendance, exclaimed.

Genetic Alliance was originally funded by March of Dimes and the Maternal and Child Health Bureau/HRSA/HHS. Founded as a support group for support groups, its members now number more than 600 disease-specific advocacy organizations, representing more than 1000 diseases affecting millions of Americans. Terry explained, "Advocates have had a major influence, but the best is yet to come. Genetic Alliance is poised to lead the community to focus on the prize, with single-minded fervor and sharp business acumen. We will engage in transforming disease into health with the force of the combined passion of this community. We are so glad you are with us -- let us go forward together with vision and focus!"

Genetic Alliance increases the capacity of advocacy organizations to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions. It is committed to capacity building in all communities. The technical assistance it provides to advocacy organizations results in measurable growth: increased funding for research, access to services, and support for emerging technologies.
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CONTACT: Sharon F. Terry, Genetic Alliance President and CEO, 202-966-5557

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