Many Islanders attended the recent “Rare Soiree,” which was organized by Effie Parks and Jill Hawkins and raised money for rare-disease research. Islander Julie Ruan Yu donated the art gallery space for the local event, which featured silent and live auctions. More than $60,000 was raised and will be shared between the FAM177A1 Research Fund and CTNNB1 Connect & Cure. Volunteers sitting at the table, from right to left: Genevieve Morton, Rachel Harris and Emily Morse. In the background singing, Aly Burkes and Deb Brandt, aka “The Small Bandits.” Photo courtesy of Kristen Elliott
It is estimated that rare diseases affect more than 30 million people in the US alone, and between 300 million and 400 million people worldwide. With so many people suffering from rare diseases, you would think biopharma and pharma companies would be heavily invested in finding cures for such a large number of people. But it’s not that straightforward.
Mercer Island’s Effie Parks notched first place in the Cause Awareness category for her Once Upon a Gene podcast in the Positive Change PodCast Awards.
Top 10 Things We Learned at Patient Advocacy Summit globalgenes.org - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from globalgenes.org Daily Mail and Mail on Sunday newspapers.