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November 2017

American Academy of Ophthalmology

November 11, 2017 @ 8:00 am - November 14, 2017 @ 5:00 pm

November 11-14, New Orleans – American Academy of Ophthalmology, thousands of people and very scientific https://www.aao.org/annual-meeting

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February 2018

2018 Rare Disease Day at Quinnipiac University

February 27, 2018 @ 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, 2018 @ 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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May 2018

Webinar: Know Your Gene

May 24, 2018 @ 2:00 pm - 3:00 pm

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…

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June 2018

Global Genes and EveryLife Foundation for Rare Diseases RARE on the Road Rare Disease Leadership Tours

June 9, 2018

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/

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VISIONS 2018 National Conference

June 21, 2018 - June 23, 2018

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

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December 2018

A Pentatonix Christmas Tour

December 9, 2018 @ 7:00 pm - 10:00 pm
Mohegan Sun, 1 Mohegan Sun Blvd
Uncasville, CT 06382 United States
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A Pentatonix Christmas Tour at Mohegan Sun Arena Skybox!

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March 2019

A Rare Opportunity

March 30, 2019 @ 6:00 pm - 8:30 pm
Lake of Isles, 1 Clubhouse Dr
North Stonington, CT 06359 United States
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  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…

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July 2019

New Kids On The Block: The Mixtape Tour

July 3, 2019 @ 7:30 pm - 10:30 pm
Mohegan Sun, 1 Mohegan Sun Blvd
Uncasville, CT 06382 United States
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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…

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LCA Family Conference 2019

July 26, 2019 - July 28, 2019
Warwick Rittenhouse Square, 220 S 17TH ST
PHILADELPHIA, PA 19103 United States
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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  

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