The following item was in the National Organization for Rare Disorders e-newsletter. I wanted to draw the Hermansky-Pudlak Syndrome and Chediak-Higashi Syndrome world's attention to this. It takes place exactly a month before the New York Conference. It might be a way to get some media coverage for HPS, CHS and the issues of living with a rare disorder.
Coming Soon: Ways to Get Involved in Rare Disease Day 2011
As the national sponsor for World Rare Disease Day, NORD is preparing to launch a redesigned Rare Disease Day US website, with suggested ways for individuals, patient organizations, professional societies, and companies to get involved in Rare Disease Day 2011. Those who were signed on as Rare Disease Day Partners for 2010 will receive email blasts about plans for 2011. Plans will also be shared in the November e-News. We hope all e-News readers will support Rare Disease Day on Feb. 28, 2011. Forty-six nations around the globe participated last year, and even more will do so in 2011.