MEDIA ADVISORY: Caregivers, Industry Leaders Bring Attention to Rare Disease
CBIA and the National Organization for Rare Disorders announce Rare Disease Day on Thursday, February 25 at the Legislative Office Building (2nd Floor Atrium). The program starts at 9 a.m.
During the event, patients, caregivers, medical professionals, industry representatives, and state legislators will share their stories and support for the estimated 357,000 residents living with a rare disease in Connecticut.
Expected to speak is Jackie Stager, a 14-year-old Ehrlers-Danlos syndrome patient, who will discuss the creation of the Rare Disease Task Force.
The event will also include a 10-minute presentation by Paul Pescatello, senior counsel and executive director of the CBIA Connecticut Bioscience Growth Council, on the critical importance of the state’s biotech industry in treating rare diseases.
A rare disease is one that affects fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting nearly 30 million Americans, according to the National Institutes of Health.
Participating industry organizations include: Achillion, Alexion Pharmaceuticals, Amgen, Boehringer Ingelheim, Jackson Labs, Mount Sinai Genetic Testing Laboratory, and Pfizer.
Patient groups represented include: Fibroalmellar Cancer Foundation, Mitochondrial Disease, Network of Tyrosinemia Advocates, Ehrlers-Danlos, Mowat Wilson, Immune Deficiency, Hemophilia, and others.
Media wishing to attend the event should contact Meaghan MacDonald (860.244.1957).
CBIA is Connecticut’s largest business organization, with thousands of member companies, small and large, representing a diverse range of industries from every part of the state. For more information, please email or call Meaghan MacDonald (860.244.1957).
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