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.
US State/Region-specific Facebook Groups:
Demographics-based Facebook Groups:
LHON Affected Women
Interest-based Facebook Groups:
Symptoms/mutation-based Facebook Groups:
Country-specific Facebook Groups:
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.
There are many Zoom events where people can connect with others with similar interests. Each U.S. region meets quarterly. Moms of LHON-Affected "Kids of All Ages," Dads of LHON-Affected "Kids of All Ages," Affected Teens, Affected Young Adults and those interested in Assistive Technology meet every other month. Zoom events about Navigating Employment, Navigating Education, Charles Bonnet Syndrome, Spouses, LHON Sisterhood, Affected at 60+, 3460 mutation, LHON Plus and LHON-MS also take place. Click the calendar below to find gatherings of interest to you.
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:
There are LHON Conferences and groups in various countries; visit your country's LHON group or Facebook group for details:
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.
5. LHON Community Updates
Annual updates on the developing global LHON community take place at the LHON Conference each June.
6. LHON in the News
Many individuals affected by LHON have been featured in the news, such as in these TV shows, videos and articles.
7. LHON Books & Videos
Several people have shared their LHON journeys in books and videos.
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.