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IMP 10 Year Logo

10 years in review

 Over the last 10 years IMP’s reach has grown around the world. Here are just a few highlights!  

 We are proud to:

  •  Have 16 incredible patient organisations as members.
  •  Have nurtured strong international networks with stakeholders from the medical world, researchers, industry, EMA/FDA, Eurordis and ERN’s.
  •  Collaborate with international consortium, Genomit, on the development of the first non-clinical global mitochondrial disease patient registry.
  •  Participate in the Leigh’s Syndrome, CureMILS, project.
  •  Facilitate the review and publication of the list of medicines to be used with caution by mito patients.
  •  Host World Mitochondrial Disease Week, including Light Up for Mito and LHON Awareness Day, with support from our member, the Mito Foundation.
  •  Have facilitated a successful study into chronic pain in mitochondrial diseases.
  •  Have developed guidelines to bring issue of chronic pain to clinical settings.
  •  Have participated in the study PowerMe, a blended cognitive therapy to cope with fatigue and pain for 8-18 year olds.
  •  Provide international support services for any patient anywhere in the world, in collaboration with our members: MitoAction and the Mito Foundation.
  •  Organise, facilitate and sponsor workshops on various issues.
  •  Participate in workshops organised by groups such as ENMC and Mitochondrial Expertise Centres.
  •  Manage international Facebook communities, with support from our member, UMDF.
  •  Provide information and news on our website, social media and through our network to the global mitochondrial disease community.
  •  Have raised awareness about mito and IMP through presentations to national and international audiences.

We are grateful to our Founder, Elja van der Veer, who was the driving force behind IMP for 10 years. Elja retired in June 2021. 

IMP is run for, and by, our members and we are sincerely grateful for the many ways they support us.

 

© 2021 Int. Mito Patients