Patients

Abliva works by a patient-centric development approach where collaborations with patient organizations are key. In the KL1333 project, preparatory activities for the upcoming efficacy study include patient registry and interview studies. Abliva also contributed to the making and funding of UMDF's Voice of the Patient Report 2019.

“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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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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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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