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February 2018

2018 Rare Disease Day at Quinnipiac University

February 27 @ 1:00 pm - 3:00 pm
Frank H. Netter MD School of Medicine, 370 Bassett Rd
North Haven, Connecticut 06473
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Rare Disease Day is a global event when we raise awareness of some of the 7,000 different rare diseases. Although each disease on its own is rare, amazingly 1 in 10 Americans is living with a rare disease! The goal of RDD is to connect patients, families, caregivers, and patient organizations; to provide opportunities for patients and parents to share their stories; and to promote education, awareness, and advocacy. SSH board member Shanda Easley and her daughter Helena, who is…

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CT Rare Disease Day 2018

February 28 @ 8:30 am - 11:00 am
CT Legislative Office Building, 300 Capitol Avenue
Hartford, CT United States
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Connecticut Rare Disease Day Advocacy Event February 28, 2018 at 8:30 am Legislative Office Building, 300 Capitol Avenue, Hartford, CT 06106 The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in…

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