Advocacy

Camron King, Chairman of the Board, VHLFA

Orlando, Florida, June 2008

Camron King, Chairman of the VHL Family Alliance, represents VHLFA in a number of advocacy opportunities in Washington, in partnership with the Genetic Alliance, of which we are a member.

As a small non-profit, we do not have the resources to lead advocacy efforts. However, we are a member of several coalitions that represent the causes we care about in Washington.

• Genetic Alliance - re genetic privacy and quality of DNA testing
  
  
• National Organization for Rare Disorders (NORD) re faciliating the development and approval of drugs for rare diseases, and ensuring access to those drugs.
  
  
• Partnership to Improve Patient Care - working with the healthcare revisions in Washington to ensure that changes made are in fact beneficial to patient, and work to improve the quality of healthcare.

Click here for the handout