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Registering patients and genetic carriers in large numbers is very useful to allow adequate power in studies to progress our understanding of disease processes and guide therapies. Since LHON is relatively rare, it is important for as many patients and carrier families as possible to register their data for scientists to study.
IFOND is cooperating with LHON.org, LHON Canada, and The LHON Society, powered by RareX in maintaining a Leber Hereditary Optic Neuropathy registry database. LHON patients and carriers from around the world wanting to participate in research on LHON are encouraged to register.
Learn more and register at this link:
Leber Hereditary Optic Neuropathy - Data Collection Program.
Videos about the LHON Data Collection Program, and tips and recommendations when completing registration, are at these links:
LHON Data Collection Program Videos
LHON Data Collection Program Tips and Recommendations.
Other important registries include:
UMDF Mitoshare
Mito Registry [Australia]
Orphanet registry search [Europe]
Global Mitochondrial Disease Patient Registry
MitoCanada patient contact registry
Abdul-Fatah A, Esmaeilisaraji L, Juan CM, Holcik M (2022) Mitochondrial disease registries worldwide: A scoping review. PLoS ONE 17(10): e0276883. https://doi.org/10.1371/journal.pone.0276883
Efficient funding
IFOND is an extremely lean, all volunteer 501(c)(3) tax status registered nonprofit. We have no salaried associates. Our process minimizes costs and maximizes funding for researchers' direct, non administrative expenses. All donations are tax deductible in the United States of America. Our recent tax returns are searchable here e.g. latest IRS website listed year 2023 here. Tax Year 2022 Form 990EZ and Tax Year 2022 IRS Filing Acceptance. Also see here. Our strong scientific board includes many of the prominent world leading published researchers in optic neuropathies who plan, guide and do research in optic nerve disease. If this big bang for your buck, open disclosure model appeals to you, please donate. If you are a researcher in optic neuropathy, we welcome your funding application.
LHON IFOND research | LHON treatment prospects | Mitochondrial Genome Editing | LHON talks | Pay it forward | Mitochondrial Regulation | Avoid BAK eye drop preservative, etc. | We experiment with cigarette smoke so you need not. | Viral vector trials | EPI-743 LHON trials | Idebenone LHON treatment
Digests: NEI News | Mitochondrial Disease News LHON | ARVO Journals LHON | PubMed LHON | Europe PMC LHON | MRC-MBU newsLast edited: 25 August 2025
The International Foundation for
Optic Nerve Disease
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Optic Nerve Disease.
The information contained on this website should not be considered medical guidance or professional advice. IFOND is not responsible for errors or omissions in information provided on this site or actions resulting from its use. IFOND does not publish all information from all available sources on optic nerve disease. IFOND is not responsible for the validity of the studies or reviews nor is it an advocate of studies or reviews mentioned on or linked from the IFOND web site. IFOND does not endorse or recommend participation in any particular clinical trial or treatment protocol which may be mentioned on this site. Direct any questions concerning your personal health to your appropriate health care professional.