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1.  LHON Facebook Groups


LHON is rare, so each individual affected tends to feel isolated and struggles to find the information they need to adjust to their sudden vision loss. LHON Facebook groups connect people around the world, sharing important information and empowering them with the information they need to move forward. There is a large, global Facebook group with over 5,000 people around the world who are affected by LHON, carriers, sighted supporters, and others interested in LHON. It's the best place to share information, ask questions, and be involved with the global LHON community - just click the Facebook logo below to join the conversation. There are also many smaller Facebook groups that enhance connections based on location, demographics, interests and symptoms/mutation. 

Facebook logo

US State/Region-specific Facebook Groups:

     New England

     New York

     New Jersey



     The Carolinas




     Kentucky and West Virginia



     Alabama, Mississippi and Louisiana

     Texas and Oklahoma

     Pacific Northwest


Demographics-based Facebook Groups:
     LHON Affected Women

     LHON Sisterhood - Women Carrying an LHON mutation

     Moms of LHON-Affected "Kids of All Ages"

     Dads of LHON-Affected "Kids of All Ages"

     Spouses (or similar) of LHON-Affected People

     Onset at 60+

Interest-based Facebook Groups: 

     Assistive Technology   


     Navigating Education/School with LHON

     Navigating Employment/Careers with LHON

     Sports & Fitness


Symptoms/mutation-based Facebook Groups:

     LHON Plus


     14484 mutation

     3460 mutation

     3635 mutation

     4171 mutation

     13513 mutation


Country-specific Facebook Groups:













     Latin America














2. Monthly LHON Live! & other Zoom Events

On the first Wednesday of each month at 8 pm Eastern / 5 pm Pacific there is a conference call/Zoom event where anyone interested in LHON is invited to connect with the LHON community. Join the email list on the Register tab to receive emails about these and other LHON gatherings. To listen to recordings of prior LHON Live! events just click the button below.

LHON Live! logo

There are many smaller Zoom events where people can connect based on interests. There are events for each region of the U.S., for Moms and Dads of LHON-Affected "Kids of All Ages," Affected Teens, Young Adults, Affected at 60+ and Women, Spouses, and the LHON Sisterhood.  There are gatherings on topics including Assistive Technology, Navigating Employment and Education, Parenting with LHON, Charles Bonnet Syndrome, LHON Plus, LHON-MS and the 3460 mutation. Click the calendar below to find gatherings of interest to you.

2024 LHON Zoom Calendar - Eastern Time

2024 LHON Zoom Calendar - Central Time

2024 LHON Zoom Calendar - Mountain Time

2024 LHON Zoom Calendar - Pacific Time

3. LHON Conferences & Global Groups


The next annual LHON Conference will take place June 27-29, 2024 in Cleveland, OH. For details, visit the Conference page. To view videos from prior LHON Conferences, visit this link:

   LHON Conference Videos


There are LHON Conferences and groups in various countries; visit your country's LHON group or Facebook group for details:

     LHON Canada

     LHON Society (UK)

     Ouvrir les Yeux (France)

     Asanol (Spain)

     LHON Eye Society (Sweden)



4. LHON Journey Videos


For each individual whose life is impacted by LHON, their LHON journey is individual and different. At the LHON Conferences, many people have shared their unique LHON journeys.

8.  “Welcome to Holland”


Learning that you or a loved one is affected by LHON requires a significant emotional adjustment. You’re joining a new community of people affected by vision impairment and a genetic disorder; probably not the community you had been a part of before, and not one you would have chosen to be a part of, yet a welcoming and helpful group of people.  You can still remain involved in the world of the fully-sighted, but you’re also now part of a new and different community.  Those who have made the adjustment before you tend to be very willing to help you through the process of making that adjustment, the emotions of which are captured nicely in the following story:


Welcome to Holland - by Emily Perl Kingsley 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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