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 Politicsview video
1Caregivers – First Put on Your Own Oxygen Maskview video
2Effective Collaboration: The Path to Reaching Our Goals (Dr. Steve Groft)view video
3Partners Panel: Creating Strong Alliancesview video
4RARE Foundation Allianceview video
5Platforms Panel: Connecting Your Community Onlineview video
6RARE Policy Updateview video
7Drug Development 101view video
8Conversation with the Experts: Social Mediaview video
9Conversation with the Experts: Fundraisingview video
10Conversation with the Experts: Public Relationsview video

Doodle Sessions 2013