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LCA Family Conference 2018

October 5, 2018 - October 6, 2018

Come join us for a day of learning and connecting with our LCA (Leber congenital amaurosis) community. We kick off on Friday night with a welcome dinner reception, and on Saturday we’ll hear from experts how treatments are developed, the role of the patient voice in supporting the development of treatments, and exciting research updates in LCA and rare inherited retinal disease. Even better, you’ll have time to discuss living with rare retinal disease with other individuals and families.

Bring the Kids! Our generous sponsor, Mystic Aquarium, is preparing a special day for your kids ages 6 and older at the Aquarium. Just a 10-minute ride from the conference – transportation, lunch and activities are included in the fee so you can focus on the conference sessions. There is no conference charge for children under 6.  To inquire about childcare for children under 6, please contact us at info@sofiaseeshope.org.

Our Generous Sponsors

      Editas logo       Sanofi Genzyme logo          Dominion logo         Mystic Aquarium logo


Conference Overview

Dinner Friday night and breakfast, lunch and coffee breaks are all included in your conference fee.  If you have special dietary needs, please let us know ahead of time.

Friday, October 5 

6-8 p.m. Welcome Dinner for LCA Families

Saturday, October 6 

7:30-9 a.m. Breakfast
8:30 a.m. Mystic Aquarium pick up from hotel for kids
9 a.m. to 3 p.m. – Conference sessions. Click here to see session descriptions.
2:30-3 p.m. Kids return from Mystic Aquarium

Saturday Evening 

Join us for our fundraiser, Dinner in the Dark, beginning at 5:30 with a cocktail reception.  




How can I contact the organizer with any questions?

Send any questions to: info@sofiaseeshope.org or call 860-556-3119. (Please be patient, we have no full time staff!)

What’s the refund policy?

Full refund with a seven day advance notice.

Is there any financial assistance available?

Yes, we do have limited funding set aside for those traveling from other parts of North America who would like to attend, but may need financial assistance. Please contact us by email.

How many people will be attending the conference?

This is our first year, we have no full time staff and are mostly volunteer run so we are capping the number of attendees to 60. Registration to LCA individuals and families will be available on a first come, first served basis, so don’t wait to register! We look forward to meeting you and with your feedback and input, perhaps we can plan a much bigger conference next year!


October 5, 2018
October 6, 2018


Mystic Marriott Hotel and Spa
625 N Rd
Groton, Southeastern Connecticut 06340 United States
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