July 10, 2012

Rare Patient Advocacy Summit!

SEPTEMBER 28, 2012
9am to 3pm
Balboa Bay Club, Newport Beach CA
Join us September 28th as Global Genes | RARE Project will host the first annual Patient Advocacy Summit, where patient community participants can hear directly from and engage in dialogue on various topics to educate and inform.  A major challenge facing the RARE Disease community is the lack of significant, open and regular communication on common issues of broad interest.  While each rare disease is unique from a scientific standpoint there are common social issues which span the entire community. 
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
9:00 Introductions – Sharing our Common Ground
10:00 RARE Advocacy – You Have the Power
10:50 Break
11:00 Innovative Technologies & Platforms
12:00 Working Lunch – Table-Topic Focused Networking
1:00 Building Healthy RARE Disease Communities
2:00 Break
2:15 Communicating with the Public
2:45 Collaborations, Re-cap, Next Steps, Wrap Up
3:00 Closing Remarks
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.
For more information click HERE.

Yes, our family (Matthew, Cristina & Bertrand) is hoping/planning to attend! So excited!

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