Genetic Alliance

my name is Sharon Terry and I'm the president and CEO of genetic Alliance and genetic Alliance is an advocacy organization for 10,000 organizations and of those organizations about a thousand two hundred our disease-specific organizations and the rest are things like hospitals universities policy companies so i began because my two children were diagnosed two days before christmas in 1994 with a genetic disease that i had never heard of well the first few weeks certainly were about my children they could possibly lose their vision when their age 30 or so i expanded my thinking to realize it's really about all the people with this particular disease then I said well you know working on just one of these diseases doesn't make much sense because all of these diseases need the same things awareness building they need education they need registries they need bio banks they need drug development they need test development the music industry responded to our needs and made iTunes and you know Rhapsody we can get music on demand in a way we never could before and I think we're gonna see the same thing in health and medicine you

2 thoughts on “Genetic Alliance

  • Hola mi nombre es Linda Arroyo el motivo de mi comentario es como sabe si ya estoy con los síntomas de tay-sachs pues mis dos hijos fallecieron de este síndrome. Ahora yo tengo convulsiones. Deterioro cognitivo fibromialgia y muchas cosas más soy de Guatemala y ya no se a quien acudir muchas gracias!!

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