Being a Rare Disease ePatient at MedX

Last month I attended the Stanford Medicine X conference, on scholarship, as an ePatient delegate. I've since had the chance to speak with Daniel Levine, on RARECast, about my experience, and conference topics of interest to the rare disease community.

social media & storytelling influencing therapy development

When asked by RARECast host Daniel Levine, what's driving the current significant interest of therapeutic developers in rare diseases, here's what Michelle Berg, Vice President of Patient Advocacy at Abeona Therapeutics, had to say, regarding the role of social media and storytelling:

“Parents and patients have of course always been passionate about finding answers and raising awareness for their particular rare disease. They finally now have a strong platform for distributing their messages, loudly and swiftly, through social media and the internet. I think it’s given them a much better way to connect as a community, and as importantly, has put faces, voices, and stories in front of a global audience. It’s become really as simple as a click of a button for people to share, to donate or otherwise show their support. And so, this I feel, has empowered foundations and individual families to raise large amounts of money and put that towards research programs.”    

You can listen to the full story on the RARECast by Global Genes.