2013 RARE Patient Advocacy Summit

Our 2nd Annual “RARE Patient Advocacy Summit
was held on Friday, September 20, 2013
at The Balboa Bay Club & Resort in Newport Beach, CA.


From Symptom to Cure:  The Journey of a Rare Disease Advocate ~ Equipping Patients to Make a Difference

The Global Genes | RARE Project held a unique and interactive educational experience at our 2nd Annual Patient Advocacy Summit on Friday, September 20, 2013, with over 150 rare disease advocates and community members attending in person and over 300 registered for our live webstream of the event.

The summit offered practical advice, case studies and networking opportunities as we learned from one another.  The goal was to have patient advocates walk away with a better understanding of the challenges they will face and where they can be most effective in helping advocate for their disease/disorder.

Special thank you to our sponsors, panelists, and Siren Interactive for helping us put together such an empowering event!

If you were unable to make the event, we have videos from each session available below.  You may also download the following materials from the summit:

Download Agenda (PDF)
Download Panelist Biographies (PDF)
Download Summit Slides (PDF)

Summit Agenda & Videos
Introductions – Partners, Platforms, and Politics view video
1 Caregivers – First Put on Your Own Oxygen Mask view video
2 Effective Collaboration: The Path to Reaching Our Goals (Dr. Steve Groft) view video
3 Partners Panel: Creating Strong Alliances view video
4 RARE Foundation Alliance view video
5 Platforms Panel: Connecting Your Community Online view video
6 RARE Policy Update view video
7 Drug Development 101 view video
8 Conversation with the Experts: Social Media view video
9 Conversation with the Experts: Fundraising view video
10 Conversation with the Experts: Public Relations view video

Doodle Sessions 2013