A major challenge facing the rare and genetic disease community is the lack of a forum for significant, open, and regular communication on common issues of broad interest. While each rare disease is unique from a scientific standpoint there are many other issues which span the entire rare community – resources, policy, funding, research, patient quality of life, clinical care, payers, etc.
In conjunction with the first annual RARE Tribute to Champions of Hope Gala, Global Genes held a Patient Advocacy Summit on September 28, 2012, from 9 a.m. to 3 p.m. at the Balboa Bay Club & Resort. Patient advocates engaged, learned, and discussed a variety of topics that directly affect them leading to collaborations that will benefit the entire rare community.
The event was highly interactive. Panels and discussion were prioritized over formal lectures and presentations. The outcome was not pre-set, rather it was 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.
The event was webcast live and is available for viewing online (see links below).
Summit 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|
This hugely popular event was sold out weeks before the event took place with 140 participants representing a variety of diseases, patient foundations, pharmaceutical companies, and companies supporting the rare community with over 200 participating via webcast.
Save the Date!
Please join us for our 2nd Annual Patient Advocacy Summit on September 20, 2013, at the Balboa Bay Club & Resort.