To celebrate the World Mitochondrial Disease Week (September 15th to 21st), the MitoGether consortium, comprising 12 patient associations and their families including AFM-Téléthon, is launching a reference website. It aims to be the leading resource on mitochondrial genetic diseases, providing expert information on research, diagnosis, medical care and treatment for these diseases, which are associated with significant clinical and genetic heterogeneity.
MitoGether aims to:Â
- Better inform those affected: understand mitochondrial disease, find a local center of expertise to receive care from specialists, identify the relevant patient advocacy group, follow and understand ongoing research, be notified of trials in preparation or recruiting participants… all this information helps people find their way and receive better care.Â
- Better inform and support doctors and researchers: keep up with the latest knowledge and medical-scientific publications, learn about optimal care, be alerted to current and upcoming studies and clinical trials, and available research support, identify relevant scientific events and conferences for disseminating information… All of these are valuable resources for professionals.Â
- Better inform pharmaceutical companies about the specific characteristics and strengths of France and its centers of expertise in order to accelerate the development of tomorrow’s treatments: gain a thorough understanding of the population affected by mitochondrial disease in France, understand how patient care and research are organized, identify key patient advocacy groups ,mitochondrial experts and clinicians, and get in touch with them… An asset for accelerating the availability of mitochondrial treatments.Â
At the Institute of Myology, 3 trials on mitochondrial diseases are currently underway:
- Mitochondriopathies register: prospective follow-up of a cohort of adult patients with mitochondrial diseases (observational study)
- REN001-201 / STRIDE: A double-blind, placebo-controlled study to evaluate the efficacy and safety of 24 weeks treatment with REN001 in patients with primary mitochondrialmyopathy (PMM)
- REN001-202: An open-label, multi-centre study to evaluate the long-term safety and tolerability of REN001 in subjects with primary mitochondrial myopathy (PMM)
Further details on the trials on mitochondrial diseases currently underway at the Institute
Access consortium press release (16 September 2025) Launch of www.mitogether.com, the reference website for professionals and families affected by genetic mitochondrial diseasesÂ
Access the website site www.mitogether.com
