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LHON Deutschland e.V. Joins IMP

Welcome to our newest member LHON Deutschland e.V.  IMP is excited to work with them to support people living with LHON around the world. LHON Deutschland e.V. has played an important role in the last two LHON Awareness Day events by providing patients who have shared their experiences during the Facebook live events.  

Tom Schuster commented, “We are a German-speaking self-help association for people with the very rare eye disease LHON. We want to make rare things visible and look with you strengthened, into the future! The focus of our young association is self-help and the creation of awareness for LHON. Therefore, we are committed to a broad education, so that LHON becomes more visible and better diagnosable. In the sense of the founding spirit we bring together patients, relatives as well as interested persons, create common networking and personal exchange. With the decision to join IMP, we take networking to a new, international level. We want to be an informative and helpful anchor for everyone and accompany and support you in your life with LHON.”
Paula Morandi, IMP Board Member commented, “As the LHON Patients Representative for Mitocon and IMP I’m extremely pleased to welcome LHON Deutschland e.V. to IMP as I have always expressed the importance to spread awareness on LHON particularly as it is often mistaken  for an eye or retinal disorder which has nothing to do with the MTDNA.  Today, since we have a drug which has been approved by EMA for the treatment of LHON, it is very important  to join forces so as to reach a diagnosis as soon as possible and start treatment before it’s too late.  IMP is the perfect network which brings patients and clinicians together towards finding a cure."

For more information visit LHON Deutschland e.V.'s website

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