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 Groundview video
1RARE Advocacy – You Have the Power!view video
2Innovative Technologies & Platforms – Accessing the Scienceview video
3Non-Profit Business Models – Managing the Moneyview video
4Partnering With Industry – Creating Collaborations that Lastview video
5Building Healthy RARE Disease Communities – Connecting With Families We Serveview video
6Communicating with the Public – Developing an “Always On” Strategyview video

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