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Our Projects

      • Global Patient Register: Developing a non-clinical databank of mitochondrial patients all over the world. The Register will provide insight, knowledge and understanding of mitochondrial patients and may help researchers bring treatments and cures closer to reality.

 

  

World Mitochondrial Disease Week logo

      • World Mitochondrial Disease Week takes place in September each year. Campaigns include Light Up for Mito, Faces of Mito, Messages of Hope and LHON Awareness Day (19 September). These campaigns provide member organisations with the tools to engage with their local mito community, as well as enabling individuals in countries without a national body, to raise awareness around the world.

 

      • Quality of life study: In 2019 this scientific publication confirmed that chronic pain is experienced by the majority of adult mitochondrial patients. Along with fatigue, chronic pain is a core symptom which is often overlooked. A new quality of life study is underway, focusing on everyday coping strategies for 8-18 year old mito patients.

 

The fundamentals of our work...

  • Facilitating communication and collaboration between member organisations. Sharing best practices and joining forces to represent patients from around the world as one global voice. Supporting national campaigns and events, and sharing their work.

 

  • Liaison and support of mitochondrial patients all over the world, particularly in countries where there is no national organisation. IMP responding to individual enquiries as well as hosting a closed Facebook group, in which patients offer support and share experiences with each other.

 

Photo of a microphone

  • Communicating the impact of mito on patients to the European Medicines Agency, US Food and Drug Agency and other authorities, with the aim of impressing the urgent need for treatments and cures.

 

  • Strengthen relationships with researchers and clinicians globally: Organising and facilitating workshops with mitochondrial specialists, researchers, and representatives from the pharmaceutical industry enable discussions about important issues affecting the mito community.

 

  • Providing endorsement of studies into mitochondrial diseases to help secure grants.

 

  • Supporting Innovative Training Networks (ITN) funded by the European Commission to train and educate young scientists/academics in mitochondrial medicine.

 

  • Participating in patient advocacy groups for European Reference Networks for rare diseases (ERN’s are virtual networks involving healthcare providers across Europe). Two ERN’s involve mitochondrial patients - neuromuscular disorders (EURO-NMD) and hereditary metabolic disorders (MetabERN).

 

  • Maintaining networks with pharmaceutical companies involved in mitochondrial medicine. Whilst IMP is completely independent, creating connections is an important way to ensure patients are heard within the pharmaceutical industry.

 

 

IMP joins wider international networks supporting people with mitochondrial disease, where our missions and objectives align, often through the rare disease community.

 

© 2020 Int. Mito Patients