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|