On October 15th, healthcare professionals, patient advocates, members of the pharma and biotech industry, and government officials will come together to acknowledge the struggles, accomplishments, needs and aspirations of the rare disease community. There will be expert panel discussion shining a light on the effects of rare diseases on the community, as well as a Global Genes Forum and Government Official and Health Department presentations. The overall goal of this event is to educate the general public, government officials, and healthcare professionals on the effects rare diseases have on not only the patients, but also the loved ones and caregivers.
Tentative guest speakers include US Rep. Lee Zeldin, US Senator Charles Schumer (or one of his aides), and US Senator Gillibrand (or one of her aides). There will be members from the Town of Brookhaven Council, Suffolk County Legislators, Suffolk County Health Department members, NY state Representatives, and several patient advocates in attendance.
This event is FREE. Make sure to print your ticket and present it at registration on the day of this event.
Highlighted Supporters of A Day for Rare Diseases:
US Representative Lee Zeldin, US Senator Charles Schumer Town of Brookhaven, Suffolk County Legislature, Everylife Foundation, Global Genes, Sarcoidosis of Long Island, Foundation for Sarcoidosis Research, the Wellness Institute for Rare Conditions (WIRC) and several other rare disease patient advocacy groups. To learn more about this event and see all of the supporters Click Here.
FREQUENTLY ASKED QUESTIONS & THEIR ANSWERS:
- Is there a discounted room rate for those traveling to this event and wishing to stay in the area? Yes! We have reserved a room block at the Hilton Garden Inn Stony Brook, the hotel that this event will be taking place at. Click Here to reserve your room today. The discounted room rate is $149.00 per night. Reservations can also be made by calling the front desk at 631-941-2980 and referencing the Rare NY group or the group code RARE NY.
- What's the dress code? We ask that all attendees wear jeans in support of one of our several supportive sponsors, Global Genes. If you have a t-shirt with your organization's name and logo, you are encouraged to wear it along with your jeans. For those who cannot attend, we ask that you wear jeans on October 15th in honor of Rare Diseases and post a selfie of yourself rocking your jeans tagged with #2016RareNY.
- Will this event be livestreamed? Yes. Follow us @RareNewYork on Facebook so that you can view the event being streamed live. Presentations, videos, and photos will be posted online in the upcoming weeks after the event as well.
