Of course, we know mitochondrial diseases exist all over the world, but imagine if there was a network that connected these less-developed communities with our more advanced patient resources, that provided patients with access to the information and expertise we have access to. That was right up there as our charity mission when we attended the 16th UK Neuromuscular Translational Research Conference at UCL last month.
The International Centre for Genomic Medicine in Neuromuscular Diseases (ICGNMD) is an international consortium which links UK experts with clinical and research partners from lower- and middle-income countries to collaborate in diagnosis and research into neuromuscular diseases. Leaders of the ICGNMD consortium were present at the conference to share their incredible outreach progress, as were team Lily’s Alison, Head of Research & Finance, and Katie, Science & Patient Engagement Officer. What a wonderful opportunity for us to extend our global relations and spread the word about mitochondrial disease – and that’s exactly what we did.
Through Lily’s role on the board of the International Mito Patients (IMP) organisation, we understand the challenges of reaching remote communities. Many developing countries don’t have structured healthcare systems let alone patient groups, so it’s our international responsibility as developed countries to help change this. How exciting to find ourselves perfectly placed to share IMP’s global patient outreach vision with the ICGNMD teams, who can act as a bridge for us to reach these developing communities.
We’ve always known these mitochondrial disease communities exist in developing countries, but this is the first time we’ve had a way of finding, and more importantly, connecting with them. Not only could these collaborations help bring a faster diagnosis to mitochondrial disease patients and provide new access to trials, they could also provide families with vital information and support about their condition. That’s so important in helping them to understand and better manage their mitochondrial disease symptoms – giving power back to the patient and, more importantly, giving them hope.