Updated TK2d infographics to download
9 Aug, 2024
Help raise awareness of the symptoms of TK2D by sharing our fantastic infographics. We've slightly updated these from 2023, so please do replace your older graphics with these ones. Download the version in English or landscape version in English, or follow the links for versions in Italian, Spanish, and German:...
Seeking the patient perspective: Living with LHON
9 Aug, 2024
Hello there The results of the forums have been published in two reports (see links below). They captured the key discussions and provided people living with LHON the important opportunity to connect on critical issues, share experiences and make recommendations....
LHON webinar – Save the date!
9 Aug, 2024
Theme: LHON & Gene Therapy: Where are we now? Save the date for a free, interactive webinar discussing gene therapy and LHON. Hear the latest from companies developing gene therapies for LHON, clinical experts and someone who has been part of a gene therapy clinical trial. And find out what you can do to ensure the voice of people living with LHON is heard! Our webinar will be on 19 September 2024 from 13:00 - 15:00 CEST. To register your interest click on the link below....
Italy leads way for legislation re mito DNA replacement
27 Feb, 2024
News from Mitocon: Italy leads the way in the European Union with a secondary legislation for testing mitochondrial DNA replacement techniques...
“New start” for energy metabolism – hope for people with rare diseases
20 Feb, 2024
Hello World Reprogramming of cells reveals therapeutic approaches With the reprogramming of somatic cells, scientists hope to come a step closer to a therapy and even a cure for Leigh syndrome....
STRIDE drug trial cancelled
7 Jan, 2024
We are always hopeful new drugs will be found that can take us closer to effective treatments and ultimately a cure. IMP is incredibly disappointed to learn that Reneo Pharmaceuticals has terminated its Phase III Stride trial...
IMP publishes ‘How to’ guides
1 Jan, 2024
Setting up a patient led organisation can be daunting. With so much to think about, from governance to marketing, it can feel overwhelming. We want to support our members and those thinking about setting up new mito patient organisations by sharing all that we've learnt....