Rare Disease Day Roundup: What's Happening in Your Neighborhood?
February 20, 2017
Cheryl Gavin is hosting Supercuts Supports Rare Disease Day.
Over 80 local Supercuts in Massachusetts and New Hampshire will be wearing denim in honor of Rare Disease Day. The franchisees will also be making a monetary donation in honor of Area Supervisor Cheryl Gavin’s son, Kyle. Kyle passed away July 2008 from Acute Hemmorhagic Leukoencephalitis.
The New Jersey Rare Disease Alliance will be hosting an event.
The Rare Disease Community in New Jersey has joined together to support a special event for legislators, legislative staff, the public and the media in celebration of the 10th Anniversary of Rare Disease Day.
The Rare Disease Day morning events will take place at the New Jersey Business and Industry Association (NJBIA) from 9:00 a.m. – 11:30 a.m.
The morning will begin with coffee, pastries and networking, followed by speakers from the rare disease community including patients, patient advocates, legislators, and biomedical healthcare professionals and industry leaders.
Topics will include addressing the needs of people with rare diseases through legislation, inclusion of the patient voice in the drug development process, rare disease research initiatives, and the spirit of innovation in New Jersey. A member of the New Jersey Legislature will present a ceremonial resolution commemorating Rare Disease Day 2017 in New Jersey.
Following the speakers, patient advocates will walk to the State House to meet with legislators. The day’s events are being sponsored by BioNJ, HINJ, the New Jersey Rare Disease Alliance and NORD.
Please register here: http://rareaction.org/events/
Sarcoidosis of Long Island will be hosting an event.
Name of Congressional Briefing- “Sarcoidosis Awareness Month Resolution and it’s impact.”
US Representative Lee Zeldin
Place- HVC 201AB Capitol Visitors Center- HVC stands for “House Visitor Center”.
guests to arrive through the visitors entrance of the U.S. Capitol.
Lunch will be served
We will be having a Congressional Briefing on Sarcoidosis and what a Resolution for making April Sarcoidosis Awareness Month means to the Sarcoidosis and Rare Disease Community.
It is the first step to recognize a disease that affects over 200,000 people in the United States alone. Sarcoidosis is also the number one disease affecting 9-11 First Responders.
With this resolution we can work on receiving better funding as well as recognition for a disease that has no cause or cure.
Are you planning an event this year? Make sure to check out our page on how to get involved. We can even announce your event here on the site! Just check out https://globalgenes.org/world-rare-disease-day-event-planning-2016/.
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