Rare Disease Spotlight
Sign-up for the next meeting in November — attendance may be limited, so early RSVP is encouraged!
This event, organized by the Pharma Neighborhood Network (PNN), is in collaboration with the Pennsylvania Biotechnology Center (PABC) and the Sino-American Pharmaceutical Association of Greater Philadelphia (SAPA-GP).
TOPIC/THEME: Awareness in the “rare diseases” ecosystem
REGISTRATION FEES: None
(In lieu of registration fees, small voluntary donations to the rare-disease foundations that will be presenting is suggested, but NOT required. See speaker information provided below.)
SPEAKERS:
1) Kristie DeMarco, President — Global DARE Foundation (building awareness, offering nutritional guidance and funding research related to adult Refsum disease, a rare genetically linked metabolic disorder leading to deafness, blindness, and a variety of other debilitating neurological disorders) [CONFIRMED]
Voluntary Donation: https://www.defeatadultrefsumeverywhere.org/donate
2) Brett Brackett, President — Uplifting Athletes (building awareness surrounding rare disease, and creating special sporting event moments to enrich the lives of rare disease patients, while at the same time, funding rare disease research through a unique Young Investigator Draft; similar in design to a professional sports team draft of players) [CONFIRMED]
Website: https://www.upliftingathletes.org
Voluntary Donation: https://www.upliftingathletes.org/donate