Tuesday, July 17, 2012

Global Genes! Can we count on you? RARE Advocacy

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.
Global Genes | R.A.R.E will hold a Patient Advocacy Summit on September 28, 2012, from 9 a.m. to 3 p.m. at the Balboa Bay Club & Resort. Patient advocates will engage, learn, and discuss a variety of topics that directly affect them leading to collaborations that will benefit the entire rare community.
Topics of Discussion:
  • RARE Advocacy - You Have the Power
  • Innovative Technologies & Science
  • New Non-profit Business Models
  • Building Healthy Rare Disease Communities
  • Public Communication & Media Engagement
The event will be highly interactive. Panels and discussion will be prioritized over formal lectures and presentations. The outcome is not pre-set, it will 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.
Tentative Agenda
Friday, Sept 28, 2012 | 9am - 3:00pm
9:00Introductions - sharing our common ground
10:00RARE Advocacy - You Have the Power
11:00Innovative Technologies & Platforms
12:00Working lunch - table-topic focused networking
1:00Building Healthy RARE Disease Communities
2:15Communicating with the Public
2:45Collaborations, re-cap, next steps, wrap up
3:00Closing remarks
Sign Up
Finding, aligning, and acting on this common ground will further empower the rare community to establish a powerful shared, vibrant, and global voice that will lead to increased awareness, support, actions and response.
Sign up today via
Remember... Research is the key to your cure!

No comments:

Post a Comment

Alie Campbell VP

ALIE CAMPBELL PORPHYRIA and ME TYPE OF PORPHYRIA Variegate Porphyria (VP) My story is probably not much different than most. I...