Collaborations
LHON Collective is a member of the Global Genes Global Advocacy Alliance which is a community of 820 non-profit organizations and support groups committed to changing the way the world tackles rare disease.
The RARE-X partnership with LHON Collective supports gathering, structuring and sharing critical patient data that will accelerate diagnosis, disease understanding, and development of future treatments and cures. LHON Collective patients, both affected and carriers, can enter their own medical data at this link and this federated data sharing platform provides researchers with access to robust analytical tools and libraries of rare disease data.
LHON Collective has partnered with CombinedBrain to establish a patient-centric, rare disease biorepository for LHON. These biosamples complement the LHON Data Collection Program so that LHON community members are active partners with the research community accelerating progress toward a cure for LHON.
The Boler-Parseghian Center for Rare Diseases Patient Advocacy Initiative is the first patient advocacy program in the country to focus its efforts on supporting the rare disease community. Notre Dame students are offered a minor in science and patient advocacy. Through this program, Notre Dame students have worked alongside LHON Collective on projects throughout the school year as well as through internships supported by the Center for Rare Diseases.
LHON Collective is part of the Global Genes Rare-X Vision Consortium whose mission is to promote collaboration across rare genetic ocular disorders that advances research leading to vision-enhancing therapies. The purpose is to address common challenges in a pre-competitive, collaborative environment.
