Participate in the LHON Medical Registry
When people who carry an LHON mutation share their data in this secure database, they contribute to further research that may lead to the development of treatments for LHON.
If you are an unaffected or affected carrier of an LHON mutation, please consider joining our secure global registry with RARE-X to grow the LHON patient participants, which will encourage research on this rare disease. Learn more and register at the following link: LHON.RARE-X.org
RARE-X is a data collection platform that asks general questions on all body systems (regardless of whether they are associated with the patient’s primary diagnosis or not) in a “head to toe” survey. Follow-up surveys ask more detailed questions on areas identified through the initial survey. Surveys are done online and at your own pace. This medical registry accepts anyone from around the world, though you must be able to read English fluently or be able to translate the content to English through automated or in-person assistance. RARE-X plans to add more languages over time.
If you would like assistance registering successfully, you can contact us directly at connect@lhon.org or use the scheduling app linked here to set up a video or phone call whenever works best for you.
Your Input is Needed
Unaffected carriers and those affected with LHON, let’s work together to promote a cure for LHON! Your input is needed!
Additional Info
For more information on RARE-X, a research program of Global Genes, that provides the medical registry platform for LHON Data Collection, please visit their website at RARE-X.org
Videos with more information about the LHON Data Collection Program, and a document with tips and recommendations when completing it, are at the following links.
To help further research that may lead to the development of treatments for LHON, participate in our LHON global medical registry at LHON.rare-x.org. This initiative is for unaffected or affected carriers of an LHON mutation, because both groups have the genetic mutation, and your information will add to the research possibilities for LHON.
