Join RDLA for our 3rd Annual Rare Disease Cocktail Reception & Movie Screening to kick-off Rare Disease Day (week) in Washington DC
Monday, February 25, 2013
5:00pm Cocktail Reception * 6:30 Movie Screening * 8:00 Panel Discussion
Carnegie Institution of Science, 1530 P Street Northwest, Washington DC
- Moderator: Margaret Anderson, Executive Director of FasterCures/The Center for Accelerating Medical Solutions
- Dr. Christopher Austin, Director of the National Center for Advancing Translational Sciences at the National Institutes of Health
- Dr. Emil Kakkis, MD, PhD, President of the EveryLife Foundation for Rare Diseases
- Marc Boutin, Executive Vice President & Chief Operating Officer, National Health Council
- Chris & Hugh Hempel, Addi & Cassi Fund
The event is free & open to the public. Click Here to RSVP.
Here. Us. Now. is a documentary film commissioned by the Ewing Marion Kauffman Foundation, the largest American foundation to focus on entrepreneurship.
Chris and Hugh Hempel are in the fight of their lives. Their identical twin daughters, Addison and Cassidy, have been diagnosed with Niemann-Pick Type C, a rare, incurable and fatal genetic disease that causes progressive neurological deterioration. As the devastating effects of the disease begin to take hold, the Hempels enter a world of complex medical literature, complicated clinical trials, and cumbersome regulatory mazes where new drug discovery, invention, and approval are slow and ineffective.
The Hempel’s story reveals the grim truth that rare disease is all too commonplace. Despite unprecedented investment in medical research and development, there are thousands of known rare diseases and disorders without treatments and cures. It’s a broken system moving at a tedious pace, and it leaves heart-rending personal stories in its wake.
For more information about the film, please visit: About the Film…