What: Third Annual Sanford-Burnham Rare Disease Day Symposium: Identifying and Treating Genetic Diseases in Children
Where: Sanford-Burnham Medical Research Institute, La Jolla, Calif., Building 12 (map)
When: February 24, 2012 – registration opens at 8:00 a.m. PT, program begins at 9:00 a.m. PT
Keynote speaker: Dr. Eric Green, director of the National Human Genome Research Institute
Program and free registration: click here
Symposium flyer: download PDF
Can’t make it? Submit your genetic disease-related questions for panel discussion to Nick at nburchfi@sanfordburnham.org. The symposium will be recorded and available on Sanford-Burnham’s website shortly after the event.
Sanford-Burnham’s successful series of Rare Disease Day symposia is based on the concept that treatment of rare diseases requires participation and exchange among all stakeholders—scientists, physicians, affected patients and their families, support groups, granting agencies, industry, and philanthropists. This year’s event, organized by Hudson Freeze, Ph.D., will focus on glycosylation-based disorders.
A few highlights:
- Attendance by several children with Congenital Disorders of Glycosylation who are now benefiting from new therapies
- Lunchtime panel discussion for patients and researchers
- Presentation by patient advocacy group
- Discussion of how one rare disorder relates to Parkinson’s disease
Video and media coverage of last year’s event are available here. For more information about Rare Disease Day USA (February 29, 2012), visit the National Organization for Rare Disorders.
Thank you for supporting Rare Disease Day! My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. Rare Disease Day means so much to the millions of people and families affected by the approximately 7,000 rare diseases. Thanks again! Mary http://www.lalsolace.org
Thanks for sharing, Mary! Your support is appreciated.
~Heather