Today’s Medical Monday highlights a recent podcast produced by RAWF board member and mom-advocate Eugenie Hsu who interviews Maria Picone of TREND.
When faced with her daughter’s diagnosis of a rare disease, Prader Willi Syndrome, Maria put her energy into learning everything she could to improve her daughter’s quality of life. With her background in computer programming, she launched TREND, an organization that “listens” to conversations in social media support groups to determine what is being discussed and produces analytics based on those discussions to help guide research in the rare disease space.
Through doing this, the PWS community was able to determine that there was a treatment being used in Europe for narcolepsy, an issue that can be found in these patients, and through advocacy, the parents were able to bring that drug to the U.S,, eventually to be FDA approved for use in this situation.
When asked what she would advise people to be good patient advocates, Maria says, “I think it’s really to just keep looking for people who can help you specifically and not assume that you fit into this box. Doctors don’t always know what’s possible.” Listen to the podcast Dr. DIY with Maria Picone, CEO of TREND Community.
Listen to the podcast:
Listen to the podcast:
Maria Picone is a patient advocate and co-founder and CEO of TREND Community, a digital health company whose mission is to improve the quality of life for all who live with rare and chronic disease: WWW.TREND.Community TREND uses technology to leverage social media to better understand disease burden and accelerates the discovery and delivery of new treatments.
You can check out all of the Dr. DIY podcasts on Spotify.
