Spotlight
Cure Mito Foundation
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by
admin
As part of our commitment at E-Mit to engage all key stakeholders involved in the field of mitochondrial research and medicine, we would like to shine a spotlight on the mitochondrial patient organizations across the globe who work tirelessly to support people and families living with mitochondrial disease, as well as the wider community, in so many amazing ways. This month we are shining a light on the Cure Mito Foundation and would like to thank Sophia Zilber, Board Member and Patient Registry Director at Cure Mito Foundation, for providing the update below:
“Cure Mito Foundation is a patient advocacy group led by parents of children affected by Leigh syndrome. Their mission is to join the global Leigh syndrome community in advancing patient-centered research, treatments, and cures. The organization has an international presence, with patients from over 35 countries participating in the Leigh Syndrome Global Patient Registry, developed by Cure Mito. All registry results, including a recently published paper, are accessible online.
Cure Mito hosts an annual Leigh syndrome symposium, which serves as a forum for patient families and healthcare and industry professionals to connect. Additionally, the organization has developed the first resource of its kind, AboutLeighSyndrome.com, an informational website on Leigh syndrome. Cure Mito is working with Critical Path Institute in launching a mito taskforce to promote data sharing and accelerate drug development.
Cure Mito is a member of Defense Health Research Consortium, COMBINEDBrain, Global Genes Foundation Alliance, Everylife Foundation Community Congress, and Indo US Rare Organization for Rare Diseases. Cure Mito has been rated as a Top-Rated Nonprofit by @GreatNonprofits.”
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