Update On Upcoming Conference

Albany Medical Center’s Rare Disease Forum
and
New York State Rare Disease Alliance

Family, Friends and Colleagues,

February 26, 2014 will celebrate the Second Annual World Rare Disease Day Conference. It is an expanded version. The cost of that program and our start-up costs brings me to ask if you could make a donation. I have set up a NYS Rare Disease Alliance Inc account. Donations can be made through PayPal, where you can use your PayPal account or major credit card. Simply check the bottom of the screen for that alternative. To donate click the symbol:

Since February of 2013 we have enjoyed progress that I wouldn’t have thought imaginable when I first considered starting a rare disease support group. We are in the planning stages of starting both an inpatient and an outpatient clinic; one in Albany Medical Pediatric Unit and one in concert with the Center for the Disabled. We have some award winning filmmakers considering documenting some of these ground breaking efforts; we have incorporated the NYS Rare Disease Alliance; we have the contributed support of two law firms; an initiative with RPI, and SUNY Computer Schools and Kitware Inc designing a rare disease application that will a a mobile reference library for medical records and rare disease information. RPI and SUNY Albany are considering a proposal to make this region one of Country’s leading centers of rare disease science by organizing a consortium of the regions life science schools and research institutes. And soon I will be meeting with local congressmen to go over a rare disease policy strategy I was asked to submit. We also have a web page; for now it is light on content, but it will grow (NYSRDA.com).

Happy Holidays,

Ed Fennell