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1.  Facebook


LHON is rare, so each individual affected tends to be 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, loved ones, 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.     

In addition, there are support groups and Facebook groups that can be helpful for people in various countries whose lives have been impacted by LHON. 



   Argentina Facebook group



    Germany, Austria, Switzerland Facebook group


    Australia Facebook group

    Australian Mitochondrial Disease Foundation (AMDF)


     Brazil Facebook group


     LHON Canada 

     Canada Facebook group



     Denmark Facebook group



   Finnish Federation of the Visually Impaired (FFVI)

   Finland Facebook group


   Ouvrir les Yeux
   France Facebook group


   Leben mit LHON Facebook group

   Germany, Austria, Switzerland Facebook group




   Italy Facebook group



   Japan LHON Support group


Latin America

   Latin America Facebook group


   Netherlands Blind Support organization

   Netherlands Blind Support organization LHON Facebook group


   Philippines Facebook group


   Portugal Facebook group


   ASANOL-Spain's LHON organization

   Spain Facebook group


   LHON Eye Society
   Sweden Facebook group



    Germany, Austria, Switzerland Facebook group



    Turkey Facebook group



   LHON Society
   LHON Society Facebook group

   Scotland Facebook group

In the US, there are Facebook groups specifically for people living in various states or regions where people can share information about local events of interest, request referrals to LHON specialists, join regional Zoom events and make valuable connections.  

     New England

     New York

     New Jersey



     The Carolinas




     Kentucky and West Virginia



     Alabama, Mississippi and Louisiana

     Texas and Oklahoma

     Pacific Northwest


There is a Facebook group specifically for discussions about non-ocular symptoms that might be related to LHON, and a group specifically for those with both LHON and MS:

     LHON Plus Facebook group

     LHON-MS Facebook group

There are Facebook groups specifically for discussions about various topics: 

     Navigating Education/School with LHON

     Navigating Employment/Careers with LHON

     LHON-Assistive Technology


There are Facebook groups based on your connection with LHON:
     LHON Affected Women

     Moms of LHON-Affected "Kids of All Ages"

     LHON Sisterhood - For Women Carrying a LHON mutation

     Dads of LHON-Affected "Kids of All Ages"

     Spouses of LHON-Affected People

If you would like help starting a support group in your country or state/region, or on a specific topic, please contact


2. Monthly LHON Live! Calls and other Zoom Events

On the first Wednesday of each month, at 8 pm Eastern / 5 pm Pacific, there is a conference call where anyone interested in LHON is invited to call in and connect with others in the LHON community.  Join the email list on the Register tab or the Facebook group to receive details on how to join these and other gatherings.

To listen to recorded calls, click on the LHON Live logo above to go to the LHON page on the UMDF website, scroll down and click on the link to the call you want to hear.  To receive email notifications of upcoming calls, click the "Register" button above and provide your email address.

In addition, there are Zoom events where people can connect with others with similar interests.  Each region in the US meets quarterly.  Moms, Dads, Affected Teens, Affected Young Adults and those interested in Assistive Technology meet every other month.  There are gatherings about Navigating Employment, Navigating Education, Charles Bonnet Syndrome, Spouses, Affected at 60+, 3460 mutation and more. 

2023 LHON Zoom Calendar

3. LHON Conferences


The next annual LHON Conference will take place June 30 - July 1, 2023 in Charlotte, NC.  For details, visit the Conference tab above.  To view videos from prior LHON Conferences, visit this link:

   LHON Conference Videos



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.  Global LHON Community Updates


Annual updates on the developing global LHON community have taken place at the LHON Conferences each June.


6.  LHON in the News

Many individuals affected by LHON have been featured in the news, such as in the TV show and articles below.

Jeremy Poincenot - ABC 20/20

Joe McCormick - Boston Globe

Chaz Davis - Runners World

Jared Hara - Attitude is Everything

Tucker Dupree - Men's Journal

Mark DeMontis - Toronto Star

Adrian Broca - Runners World

7.  Books and Movie About LHON


Sweden's LHON Eye Society created a book about LHON called "Look Forward."  Here's a link to the English version in a .pdf format.

Look Forward

Born With A Bomb is a collection of stories about living with LHON.

Born With A Bomb

Kevin Coughlin shares his story of losing then regaining vision.

Steph Cutler in the UK wrote this book about her first decade of living with LHON.

Living With More Vision and Less Sight

Jared Hara, now an accomplished musician, and his family shared the poignant story of becoming affected by LHON in this documentary called Blindsided.

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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