CureMITO
@cure_mito
Our mission is to unite the global Leigh syndrome community to accelerate patient-centered research, treatments, and cures. #leighsyndrome #mitochondrialdisease
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https://www.curemito.org 13-11-2018 04:39:07
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Are you attending Rare Drug development symposium hosted by Global Genes and and The Orphan Disease Center @ UPenn? If so check out our poster: 'Empowering Leigh Syndrome Families: The Creation of 'About Leigh Syndrome' an Online Resource'.
#leighsyndrome #mitochondrialdisease
We are over a month past the Rare Disease Day, but our families around the world continue to receive their Rare Bears thanks to RARE Science Inc.. Nora from Romania just got hers! If you received one too, please share photos with us!
#leighsyndrome #mitochondrialdisease
Welcome Sanford Research to the Mitochondrial and Metabolic disease taskforce led by Critical Path Institute (C-Path), bringing us to 17 members! CoRDS is a centralized international patient registry for all rare diseases and currently supports Leigh syndrome and PDCD patient registries.
We get many requests from researchers and industry asking how our patient registry can advance their work. Please fill out a form below to get a slide deck created for that purpose.
#leighsyndrome #mitochondrialdisease
docs.google.com/forms/d/e/1FAI…
Patient registry for Leigh syndrome surveys are now available in Italian. To get Italian surveys please email us at [email protected]
Learn more at: curemito.org/leighsyndromer…
#leighsyndrome #mitochondrialdisease
Learn more about our research partnership for MT-ATP6 Leigh syndrome, and the latest updates!
#leighsyndrome #mitochondrialdisease
curemito.org/atp6
Cure Mito Foundation (CureMITO) and Hope for #PDCD Foundation (@hopeforpdcd) announce a patient registry collaboration focused on research and family support - check the link for more ow.ly/sjuo50QWPYT #rarediseases #orphandrugs
Our Leigh syndrome patient registry is now listed in the List of registries by the @nih!
Please learn more and join the registry today: curemito.org/leighsyndromer…
#leighsyndrome #mitochondrialdisease
nih.gov/health-informa…
Leigh syndrome patient registry surveys are now available in Polish!
Please contact us if you are interested if you would like to register in Polish.
Learn more : curemito.org/leighsyndromer…
#leighsyndrome #mitochondrialdisease
