Genetic Alliance

Some people come to this blog looking for help and information about specific genetic conditions. Although that is something we may touch on from time-to-time as new data or databases may arise, it isn’t something we will focus on. But I wanted to provide a link to an organization that does really great work with the groups who can help with specific genetic issues: The Genetic Alliance.

They describe themselves as:

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.

They have helpful resources including disease information searches, organization searches, they are working on tissue banking to aid researchers who need to obtain samples (GA BioBank), they have mailing lists and wikis, and even a Guide for Understanding Genetics for Patients and Professionals.

They also advocate on medical and legal issues of public policy, including working hard for the GINA legislation to protect Americans from discrimination based on their genetic information.

A terrific organization. Check them out.

3 thoughts on “Genetic Alliance

  1. Graham Steel

    Here here Mary,

    Sharon Terry (Genetic Alliance President/CEO) is an inspirational woman who continues to do marvelous patient advocacy work.

    I am very pleased to have already made contact with her.

  2. Mary

    Quite so, Graham. The story of the Terry family–and how Sharon is on the patent for the gene that affects her family’s health–is tremendous.

    Here’s a look at that story if anyone is interested:
    Who Owns My Disease?

    She fought for research for her own kids, and she continues to fight for everyone’s kids. It is a beautiful thing!

  3. Graham Steel

    That’s quite a story. I only knew this in part !!

    What blew me away about Sharon was her detailed “bio” (sorry, can’t find the url anymore).

    I also understand she was a Co-founder of the Alliance for Taxpayer Access (ATA). I am proud to be a member of the ATA and I cannot thank her enough for helping to form the organization.

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