http://www.geneticalliance.org/
Genetic Alliance is a coalition of more than 600 advocacy organizations serving 25 million people affected by 1000 conditions. The organization works to transform leadership in the genetics community to build capacity in advocacy organizations and to educate policymakers by leveraging the voices of individuals and families. Genetic Alliance increases the capacity of genetic advocacy organizations to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions.