Attending Global Genes Patient Advocacy Summit 2013


Last Friday, Sept. 20, 2013, I attended the Global Genes Patient Advocacy Summit 2013. The Summit brought together rare disease advocates from across the country to share our experiences and learn from experts. 

The day started with a fantastic panel about the importance of self-care. Often, patient advocates and caregivers leave little time for themselves. This session was a much-needed reminder of the importance of caring for oneself before caring for others.

The agenda included sessions on collaboration, patient registeries, drug development, fundraising, social media and public relations.  During the drug development session, I shared the news of narcolepsy’s upcoming FDA Patient Focused Meeting. The audience’s eyes lit up and many people approached me afterwards to say how exciting it was that narcolepsy had such an overwhelming community response, especially as the first rare disease in the FDA’s program.

It was an honor to represent narcolepsy in this unique forum. I learned so much from the expert panelists and my fellow advocates. I look forward to keeping up with Global Genes via social media. 





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