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RARE Patient Advocacy Summit – 2012

I was pleased to be the organizer and host for the RARE Project | Global Genes RARE Patient Advocacy Summit on September 29th, 2012. The day-long event with 140 in attendance and over 120 viewing via a live webcast.  Videos of the event are available below for viewing.

The Summit was designed with the goal that every rare disease support/advocacy organization would benefit from some aspect of the day.  There were long-standing organizations, new organizations, and even individuals interested in becoming advocates in attendance.

Agenda & Videos
Introductions – Sharing our Common Ground view video
1 RARE Advocacy – You Have the Power! view video
2 Innovative Technologies & Platforms – Accessing the Science view video
3 Non-Profit Business Models – Managing the Money view video
4 Partnering With Industry – Creating Collaborations that Last view video
5 Building Healthy RARE Disease Communities – Connecting With Families We Serve view video
6 Communicating with the Public – Developing an “Always On” Strategy view video

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