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 |