Outreach activities for patients with mitochondrial diseases and other stakeholders

With an incidence of approximately 1:4300 live births, mitochondrial diseases belong to the group of rare or orphan disorders. To increase the awareness for mitochondrial disease to the general public and medical professionals, a variety of different activities have been employed. One of our national activities is the annual mitochondrial patient information day, a symposium that we have been organizing over the past 7 years and takes place every 3rd week in September. This attracts 350 – 400 participants and is combined with the publication of the Energy4All magazine (10,000 copies), a full-color magazine with patient stories, fund raising activities, and updates on the mitochondrial drug development process. Nowadays, mitochondrial patient information days are organized by the different European Mitochondrial Centers. Smeitink stood at the foundation of the International Mitochondrial Patient (IMP) organization, which has become a global patient and advocacy group. Members of the theme mitochondrial diseases together with international colleagues have published the Mitochondrial Medicine Booklet of which more than 10,000 copies have distributed across the world (free of charge) , among interested patients, families, students, and medical professionals. Together with the IMP, theme members, and Patient Advisory Board we have broken the world record of lighting the most monuments and landmarks ever (2017), like the Coliseum in Rome, the Sydney Opera House, and the Niagara Falls. Over 100 landmarks and monuments where illuminated in green. Creating awareness for mitochondrial diseases serves many goals, such as earlier recognition of the disease by patients, which shortens the diagnostic process and the start of interventions. The organization of the IMP has markedly improved patient engagement in the entire chain from molecule to man. Besides, this formal global organization has increased its societal impact in relation to national and international decision-making processes.