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February 2018

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
Free

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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$80

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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February 2020

NORD Connecticut Rare Action Network Rare Disease Day 2020

February 28 @ 8:00 am - 10:30 am
Connecticut State Legislative Office Building, 300 Capitol Avenue
Hartford, CT United States
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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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April 2020

CANCELED: A Rare Opportunity: New York Times Bestselling Author Kody Keplinger

April 26 @ 2:00 pm - 4:00 pm
La Grua Center, 32 Water Street
Stonington, CT United States
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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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