2018 Rare Disease Day at Quinnipiac University

Frank H. Netter MD School of Medicine 370 Bassett Rd, North Haven, Connecticut

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 […]

CT Rare Disease Day 2018

CT Legislative Office Building 300 Capitol Avenue, Hartford, CT, United States

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 […]

Webinar: Know Your Gene

You or someone you know has LCA, RP or some other rare retinal disease. But do you know what your genetic mutation is? Where to go for testing and how you can access free testing? How to work with a genetic counselor? Maybe you know the exact genetic mutation - but do you know what's […]

Free

VISIONS 2018 National Conference

VISIONS, the national conference of the Foundation Fighting Blindness, is the only event of its kind—created solely for individuals and families who are affected by retinal diseases. Find access to information on the latest retinal research and clinical trials, the doctors performing the work, and other families from around the country living with the same […]

A Pentatonix Christmas Tour

Mohegan Sun 1 Mohegan Sun Blvd, Uncasville, CT, United States

A Pentatonix Christmas Tour at Mohegan Sun Arena Skybox!

$80

A Rare Opportunity

Lake of Isles 1 Clubhouse Dr, North Stonington, CT, United States

  Please join us for an evening to raise awareness of rare inherited retinal disease. Join us to learn about vision lost and vision gained and issues facing those with rare disease. Featuring: Nicole Kear, bestselling author of the memoir “Now I See You,” about her diagnosis with retinitis pigmentosa. Christian Guardino, Howie Mandel's 2017 […]

New Kids On The Block: The Mixtape Tour

Mohegan Sun 1 Mohegan Sun Blvd, Uncasville, CT, United States

NKOTB Mixtape Tour at Mohegan Sun Arena Skybox Wednesday, July 3, 2019 7:00 p.m. Buy Your Tickets! New Kids On The Block launched their biggest tour in years in May, and Sofia Sees Hope has scored a skybox at Mohegan Sun Arena! Join us as we travel down Memory Lane on THE MIXTAPE TOUR with […]

LCA Family Conference 2019

Warwick Rittenhouse Square 220 S 17TH ST, PHILADELPHIA, PA, United States

Join Sofia Sees Hope for its 2nd LCA Family Conference in Philadelphia. In multiple sessions, hear the latest in research, treatments, education, and advocacy in the Leber congenital amaurosis and inherited rare disease communities. Families living with LCA or IRDs connect in a convivial atmosphere of shared stories and mutual support. 2019 CONFERENCE INFORMATION  

NORD Connecticut Rare Action Network Rare Disease Day 2020

Connecticut State Legislative Office Building 300 Capitol Avenue, Hartford, CT, United States

Please join patients, families, caregivers, medical professionals, industry representatives and state legislators at this important event on Rare Disease Day to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families here in our great state of Connecticut.

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