2012 RARE Patient Advocacy Summit – Session #1 – Political Advocacy – You Have The Power!

A discussion about the power you have in political advocacy at the federal, state and local levels. One voice – yours! – makes a world of difference …


Nicole Aldrian, Vice President & Co-Founder, Peace Love & Trevor Foundation
Jim Bialick, Vice President for Public Policy, JC White Consulting
Julia Jenkins, Dir. of Public & Govt. Relations, 
Everylife Foundation & RDLA (RARE Disease Legislative Advocates)

A major challenge facing the rare and genetic disease community is the lack of a forum for significant, open, and regular communication on common issues of broad interest.  While each rare disease is unique from a scientific standpoint there are many other issues which span the entire rare community – resources, policy, funding, research, patient quality of life, clinical care, payers, etc.

In conjunction with the first annual RARE Tribute to Champions of Hope Gala, Global Genes | R.A.R.E held a Patient Advocacy Summit on September 28, 2012, from 9 a.m. to 3 p.m. at the Balboa Bay Club & Resort.  Patient advocates engaged, learned, and discussed a variety of topics that directly affect them leading to collaborations that will benefit the entire rare community.

Dean Suhr (President, MLD Foundation) was the Summit organizer, host, and moderator.

The event was highly interactive. Panels and discussion were prioritized over formal lectures and presentations. The outcome was not pre-set, rather it was be a collective effort based on the interactions of the participants. This annual summit is open to all in the rare disease community that wish to participate and is free.

The event was webcast live and is available for viewing online at RareProject.org.