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 […]
mitochondrial diseases
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,
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
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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
New Study Strengthens Patient‑Centred Endpoint Selection for KHENERFIN Phase 3 Trial
Khondrion has announced the publication of an important qualitative study in Orphanet Journal of Rare Diseases examining the lived experience
World Mitochondrial Disease Week 2026: Putting Mito on the Map
We’re delighted to announce the launch of this year’s World Mitochondrial Disease Week theme: “Putting Mito on the Map.” Members asked
New Patient Journey for Primary Mitochondrial Myopathies Launched
IMP has worked with ERN EURO‑NMD and several leading patient organisations, including Mitocon, the Bulgarian Association for Neuromuscular Diseases, and
New TK2d Early Symptom Reflection Tool Supports Better Clinical Conversations
UMDF, in collaboration with UCB, has launched a new resource designed specifically for people living with TK2d and those who