The Hermansky-Pudlak Syndrome Network participated in Gene Day on the Hill, June 23, 2011 in Washington DC. The event brought together many representatives from groups representing genetic disorders to advocate for issues of common interest.
HPS Network President Donna Appell, and her daughter Ashley represented the HPS Network at the event.
Collectively, Gene Day on the Hill advocated for three issues:
• Funding for title V (child and maternal health programs) in the 2012 federal budget
• Funding for the National Institutes of Health and the new National Center for Advancing Transitional Sciences
• The maintaining of funding for the National Center on Birth Defects and Developmental Disabilities
Read more on each of these issues in the related articles.