“The absolute worst part about mitochondrial disease is… whatever we are fighting that day. The unpredictability of symptoms, constant demand to adapt to a new level of care/need, and most importantly, as a family unit, manage the needs of the entire family while explaining to the world around us mitochondrial disease”
From UMDF’s Voice of the patient Report, 2019
Meet Rebecca. She’s like any other five-year-old, but she can’t do all that a healthy child can do.
Meet Roger who suffers from MELAS. His symptoms manifest as diabetes, hearing loss, and kidney dysfunction.
International Mito Patients started in the Netherlands. Their mission is: “to increase quality of life for people with mitochondrial disease by facilitating cross-border cooperation and collaboration among national patient organisations”. IMP started the World Mitochondrial Disease Week, a global mito disease awareness week.
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The United Mitochondrial Disease Foundation (UMDF) is a US patient organization with the mission: “to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families”.
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“mitoSHARE is a worldwide patient-populated registry initiative stewarded by UMDF. The goal of the registry is to advance scientific research using data gathered from patients and families affected by mitochondrial disease. With every new registry participant, we gain a better understanding of the disease, which in turn facilitates diagnoses, treatments and cures, and improved standards of clinical care.”
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Mitocon is the Italian patient organisation. “La migliore qualità di vita per tutti i malati mitocondriali e le loro famiglie e la cura per tutti i pazienti”.
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“The Lily Foundation is the UK’s leading mitochondrial disease charity. Our mission is to improve the lives of people affected by mitochondrial diseases. We are working towards a future where mitochondrial diseases can be effectively treated or cured”.
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Cure Mito’s mission is to unite the global Leigh syndrome community to accelerate patient-centered research, treatments, and cures.
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Abliva is a proud member of Cure Mito’s Corporate Advisory Council (CAC).
LHON Eye Society is the Swedish patient organization for patients and families affected by the mitochondrial eye disease Leber’s Hereditary Optic Neuropathy (LHON). The Society also organizes the ‘Mito Race’, a 5 km run, during the World Mitochondrial Disease Week, to raise awareness about mito disease.
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World Mitochondrial Disease Week
Every year, during the third week of September, the World Mitochondrial Disease Week (WMDW) is being held. This global, important, and rapidly growing event was an initiative from patient organization International mito-patients (IMP).