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February 2018
CT Rare Disease Day 2018
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…
Find out more »May 2018
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 next? Join Sofia Sees Hope founder Laura Manfre and guests Emily Place, Licensed Genetic Counselor at Mass Eye & Ear, and Dr. Brian Mansfield, deputy…
Find out more »June 2018
Global Genes and EveryLife Foundation for Rare Diseases RARE on the Road Rare Disease Leadership Tours
RARE on the Road brings critical education and insights to rare disease patients, advocates and caregivers, while collaborating in an interactive, engaging environment. Topics include the Patients’ Role and Drug Development, along with breakout sessions and hands-on workshops. June 9 • Houston, TX June 30 • Salt Lake City, UT July 21 • Nashville, TN globalgenes.org/rotr2018/
Find out more »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 diseases. June 21–23 • San Diego, CA www.blindness.org/visions
Find out more »December 2018
A Pentatonix Christmas Tour
A Pentatonix Christmas Tour at Mohegan Sun Arena Skybox!
Find out more »March 2019
A Rare Opportunity
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 Golden Buzzer winner on America’s Got Talent, diagnosed with Leber congenital amaurosis, who received gene therapy to reverse vision loss. Sofia Priebe, sophomore at Ledyard…
Find out more »July 2019
New Kids On The Block: The Mixtape Tour
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 NKOTB and VERY special guestsSalt N Pepa, Tiffany, Debbie Gibson and Naughty by Nature. WOW… can you believe that??? Enjoy the concert in style with…
Find out more »LCA Family Conference 2019
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
Find out more »February 2020
NORD Connecticut Rare Action Network Rare Disease Day 2020
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.
Find out more »April 2020
CANCELED: A Rare Opportunity: New York Times Bestselling Author Kody Keplinger
WE HOPE TO RESCHEDULE IN THE FALL. Sofia Sees Hope presents "A Rare Opportunity: Kody Keplinger," New York Times bestselling author who lives with Leber congenital amaurosis. Kody Keplinger was born and raised in small town western Kentucky, where she began her writing career after penning The New York Times bestseller, The DUFF, at age 17. Kody has Leber congenital amaurosis (LCA), a rare inherited retinal disease (IRD) that causes low vision or blindness, typically from birth. Join us as…
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