Choroideremia Research Foundation plans free NYC patient and family meeting in November

The Choroideremia Research Foundation will hold a free in-person patient and family meeting Nov. 14 at SUNY College of Optometry in New York City. The event will connect people affected by choroideremia with vision researchers, clinicians and regional support organizations, while also offering updates on care and research.

Why it matters: - Choroideremia is a rare inherited retinal disease that causes progressive vision loss, often starting with night blindness and peripheral vision loss. - The November meeting is designed to give patients and families direct access to resources that can help with daily living, independence and care planning. - The event also brings research and clinical updates into one setting, which matters because there is no approved treatment or cure for choroideremia.

What happened: - The Choroideremia Research Foundation will host a free, in-person NYC Choroideremia Patient & Family Meeting on Saturday, Nov. 14, 2026. - The meeting will run from 8 a.m. to 5 p.m. at the State University of New York College of Optometry in New York City. - Registration is required. - More information and registration are available through the event page.

The details: - The event is aimed at individuals and families affected by choroideremia, but it will also highlight services for people who are blind or living with low vision across New York City and the surrounding region. - Representatives from Foundation Fighting Blindness – New York Chapter, Visions / Selis Manor, the New York Public Library, Helen Keller Services for the Blind and the New York State Commission for the Blind will share information about regional programs. - Foundation Fighting Blindness – New York Chapter will focus on inherited retinal disease resources. - Visions / Selis Manor will discuss support for independence and daily living. - The New York Public Library will cover accessible technology and library resources. - Helen Keller Services for the Blind will provide information on rehabilitation, employment and other independence-oriented services. - The New York State Commission for the Blind will share vocational rehabilitation and other services for New Yorkers who are legally blind. - The organizers say the goal is to help attendees learn about resources that can support people at different stages of vision loss. - Presentations will come from researchers and clinicians working in ophthalmology, optometry and inherited retinal disease. - Confirmed presenters include John-Ross Rizzo, MD, PhD, of NYU Langone Health and the Choroideremia Research Foundation Board. - Confirmed presenters also include Steven Tsang, MD, PhD, of Columbia University Medical Center and the CRF Scientific Advisory Board. - Additional presenters include Arathy Kartha, PhD, of SUNY College of Optometry and Rebecca Marinoff, OD, of SUNY College of Optometry. - Their sessions will provide updates on current research and clinical developments relevant to people affected by choroideremia and their families.

Between the lines: - The meeting reflects a broader push to pair disease-specific advocacy with practical local services, not just research updates. - Bringing regional blindness organizations together in one room can lower barriers for families who may not know what support exists beyond medical care. - The event also signals how patient advocacy groups are acting as connectors between academic researchers, clinicians and community services.

What's next: - Attendees will be able to use the November meeting to identify services, ask questions and connect with experts. - The event may also serve as a way to keep patients and families informed as CHM research and clinical work continue. - The Choroideremia Research Foundation is also directing people to its broader information on choroideremia at What is choroideremia.