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Get Involved

Image of Tim, student intern, Tim B, lost vision at 57, and Tim J, lost vision at 33.
Tim T, student intern
Tim J lost vision at 33.
Tim B lost vision at 57.

Find your place with our community

1. Welcome

Link to Welcome page

A warm WELCOME to those newly diagnosed with LHON. Here are some ways you can learn more and make a difference right away.

2. Register in the LHON Contact List

Link to Contact Us page

No matter how you connect to LHON, we encourage you to register in our LHON Contact List!

3. Participate in the LHON Medical Registry

Link to the LHON Medical Registry page

If you are an unaffected or affected carrier of an LHON mutation, please consider joining our global registry to grow the LHON patient participants and encourage research on this rare disease.

4. Ways to Give

Link to Ways to Give page

Choose the giving option that resonates most with you, helping to advance research, treatments, and support for LHON patients worldwide.

5. Fundraise for LHON

Help us fund research and support for LHON. It takes everyone, working together, to raise funds for cutting-edge science to benefit LHON. 

Link to fundraise for LHON page

6. Volunteer

Learn how to get involved, creating awareness and fulfilling our mission of caring for our LHON Community while working to promote the science towards a cure.

Link to Volunteer page

7. LHON Community Updates

Link to Community Updates page

View recordings of our LHON Community Updates as discussed at LHON conferences.

Terry lost vision at 32.
Terry lost vision at 32.
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