Why Nutritional Care Matters for People Living with Mitochondrial Disease
Good nutrition is an important part of managing many rare neuromuscular conditions, including mitochondrial diseases. A new educational flyer, funded […]
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Germany Takes a Major Step Toward Access to TK2d Therapy
A significant milestone has been reached for families affected by TK2d: Germany has now formally recognised Kygevvi®, the first disease‑specific
Strengthening Connections: IMP’s Ambassador Meetings
IMP has begun hosting regular Ambassador Meetings, creating a welcoming space for representatives from our member organisations to connect, share updates,
LHON Webinar: 19 September – registration open
The LHON Awareness Day Webinar is approaching quickly, taking place on 19 September (13:00–15:00 CEST). This year’s theme — Best practices in LHON: stories
Updated TK2d videos now available
Three new TK2d Awareness Day videos are being released in the lead‑up to 8 September, each sharing a deeply personal
ERN‑RND Scientific Symposium: Registries for Rare Neurological Diseases
On 10 October 2026, the European Reference Network for Rare Neurological Diseases (ERN‑RND) will host a dedicated scientific symposium focused on
Patient‑Focused Drug Development Meeting on POLG
A Landmark Moment for the POLG Community – 17 November 2026 On 17 November, MitoAction will host its first Patient‑Focused Drug Development
Pretzel Therapeutics Answers Key Questions from the POLG Community
Following the POLG Foundation Summit, Pretzel Therapeutics has shared updated answers to community questions about PX578, their first‑in‑class investigational therapy for
A Major Step Forward for the Global POLG Community
FDA clears PX578 to enter Phase 2 clinical testing At IMP, few moments bring more hope than seeing innovative science
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New Natural History Study Sheds Light on MNGIE
A new retrospective natural history study from the MitoCAMB team at the University of Cambridge offers important insights into mitochondrial neurogastrointestinal