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Lily Foundation represents patient interests at international GENOMIT meeting


21 April 2022

The Lily Foundation met with international mito organisations to advance patient interests and facilitate the collection of patient-reported data for research.

Members of mito organisations dressed in coats and scarves waiting for the start of the Genomit

The Lily Foundation attended the recent GENOMIT meeting, which was held between 7th - 9th April 2022 in Pisa, Italy and online. 

GENOMIT is a global network of national centres that work closely with patient organisations such as The Lily Foundation to improve the diagnosis and care of patients with mitochondrial disease.

The network is currently working on four projects, focusing on: 1) understanding the natural history of mitochondrial diseases and developing key clinical outcome measures in preparation for clinical trials; 2) developing a patient registry focused on collecting patient-reported data; 3) improving rates of diagnosis using new technologies; and 4) identifying new genes that cause mitochondrial disease.

The meeting was an opportunity to hear from leading clinicians and researchers about progress being made in the identification of new genes responsible for causing mitochondrial disease, as well as the development of cutting-edge techniques that have the potential to increase rates of genetic diagnosis. 

Other presentations focused on new knowledge that has been gained from studying people with a diagnosis of mitochondrial disease, and how this can be used to improve the care of patients and help to design future clinical trials.

Importantly, the meeting also gave the opportunity to demonstrate the integral role that patient advocacy groups play in the GENOMIT project.

Along with European patient organisations Mitocon (from Italy), DGM (Germany) and AMMi (France), The Lily Foundation forms part of a wider network of global patient organisations called International Mito Patients (IMP). Together, these patient organisations are responsible for ‘Work Package 2’, the coordination of a global patient-reported registry for people with mitochondrial disease.

Once set up, this registry will allow patients to play a key role in the development of global research by providing information about how their own condition affects their day-to-day lives. The data entered by the patients will be able to link with medical information collected by clinicians and together it will improve understanding of how mitochondrial diseases impact the lives of patients.

The meeting gave the opportunity to present the current progress being made to develop the platform to the other members of the GENOMIT team and we are looking forward to the launch of the global patient registry over the coming months.

For more information visit the GENOMIT website.

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