Last week the NIH Office of Rare Diseases Research hosted it’s annual Rare Disease Clinical Research Network meeting.  As a prelude to this sold out event, RARE Project was asked to speak about ‘Grassroots Activities in Rare Diseases’ of which Global Genes Project/Fund was presented, during the Coalition of Patient Advocacy Groups (CPAG) Meeting.
In the room were many Global Genes partner organizations, for others, this exciting initiative was something new.  The notion of bringing rare disease together under one unifying campaign was a subject supported by almost all participants in the meeting.    This is an exciting campaign, with tremendous potential to help raise awareness about rare disease, help educate the masses about genetics and rare disease, and what seemed most compelling to those in the room, was the opportunities surrounding the launch of the Global Genes Fund.
The ability to help bring new money into rare disease to support important ‘in their lifetime research’ for those affected was very appealing to those in the room.  Many pledged to get their organizations more engaged if they weren’t already.   All in all, daily this campaign brings new people and organizations together, it is a grassroots initiative that is truly collaborative, which is exciting to those involved!
We are continuing to reach out to patient organizations and rare disease advocates and are encouraging people to head to the  Global Genes Project and sign up to receive monthly updates and to be included in quarterly conference calls.  The goal will be to share how organizations are using Global Genes to help their organization garner awareness, educate or fund raise, and also present new cool programs and discuss World Rare Disease 2011 efforts.  This is open to all individuals and organizations that Care About Rare!