Kira Mann

New Board for IMP 

Following the election during the Annual Meeting on 10 June 2021, IMP is delighted to welcome a new Board.


Kira MannKira Mann, CEO of MitoAction in the USA, is the new Chair of the Board. Kira brings over 25 years of rare disease advocacy experience to IMP.  From organisation administration, patient and community education, legislative advocacy, research and therapy development, and supporting patients on their day-to-day journeys, Kira is committed to supporting the patient community and working collaboratively with industry partners and patient advocacy organisations across the globe to ensure that our community’s needs are met. 

“Having played a progressively more involved role with IMP over the past few years, I am confident in taking the next steps to expand my leadership within this great organisation. It is my honour to serve as Chair of IMP and to ensure that the work of this organisation continues to expand in pursuit of its goals and objectives to serve the mitochondrial disease community,” commented Kira.


Phil YeskeDr Philip Yeske was re-elected to the Board for his second term. Phil is the Science & Alliance Officer at UMDF in the USA, and has been elected as Treasurer of IMP. We are immensely grateful for all he has already done for IMP and are delighted that he will continue to sit on the Board.

Phil commented, “It has been my honour to serve on the Board of the IMP since 2017 and to witness significant growth in the organisation. As a federation of patient groups all focused on mitochondrial disease, our disease community benefits from the strength of bringing together a wide variety of voices. I cherish the connections and relationships that have been made through IMP and I am proud of the accomplishments of the organisation. With diverse membership on many levels- cultural, organisation size, mission, etc. – it is critical that IMP continue to evolve and adapt to meet the needs of the global mitochondrial disease patient community.”


Alison MaguireAlison Maguire is the Head of Research and Finance at The Lily Foundation in the UK. She has been involved with IMP for a number of years as a member of the Scientific Committee. Alison is also the Lily Foundation’s representative on the Work Package 2 Group managing the creation of the Global Mitochondrial Disease Patient Registry. 

“I became involved with The Lily Foundation in 2009 after I lost my 4 year old daughter Niamh to mitochondrial disease.  This tragedy changed my life and career direction. I decided that supporting other families and using my medical background to ensure the best research was being done into these devastating conditions was what was important to me”, stated Alison.


Paula MorandiPaula Morandi is the Patients Representative for Mitochondrial Eye Diseases with Mitocon in Italy.

Paula said, “I am truly honoured to have been appointed Board Member for IMP.  I am a mitochondrial disease affected person with a serious visual disability and I have never lost hope for a cure.  I have been trying to be of support to other patients who have lost their vision due to a mitochondrial disease and to project my passion for life.”

For more than a decade, Paula has gained experience through Mitocon and has obtained a number of certifications from the Eurordis Academy, including becoming a Patient Expert, completing courses on translational research, leadership in rare diseases and social media. Paula is involved with the LHON Patients Pathways in Italy and she spearheaded the inaugural LHON Awareness Day with IMP in September 2020.



Piero SantantionioEmma DelreyAlfons Heetjans

Thank you to our outgoing Board 

IMP would like to thank the outgoing Board for their invaluable contributions. Piero Santantionio from Mitocon, Emma Delrey from AMMi and Alfons Heetjans from the Netherlands (pictured left to right). Their skills and experience have contributed significantly to the growth of IMP over the last 3 years. Thank you.



Farewell to our Founder

Elja van der VeerThe Annual Meeting marked a significant milestone for IMP, as Elja van der Veer retired. Elja founded IMP a decade ago and has built and guided the organisation with such passion.

Alison Maguire said, “On behalf of the IMP members past and present, we would like to say a huge thank you to Elja. Thank you not only for all the selfless hours you have worked/ put into the IMP but for having the vision and the passion to build it. We are a small rare disease community which is made so much stronger when we work together. You have created fantastic foundations that we as a team will build on and hope to make you proud. Thank you from us all here and from all of the mito community world wide.”


Please watch Elja's farewell video.

Khondrion logo

Khondrion announces first patients dosed in 6-month paediatric Phase II study of sonlicromanol for mitochondrial diseases

Study will examine the pharmacokinetics, safety and efficacy of sonlicromanol, one of the most advanced disease-modifying drug candidates in development for mitochondrial disease

NIJMEGEN, the Netherlands – 21 April 2021: Khondrion, a clinical-stage biopharmaceutical company discovering and developing therapies targeting mitochondrial disease, today announces that the first patients have been successfully dosed in its KHENERGYC paediatric Phase II study (NCT04846036) to explore the pharmacokinetics, safety and efficacy of sonlicromanol in children with a genetically confirmed primary mitochondrial disease and suffering from motor symptoms.

Sonlicromanol, Khondrion’s wholly-owned, investigational lead asset, is currently being tested in a Phase IIb study as a potentially disease-modifying treatment for adults with mitochondrial disease. The compound is a first-in-class, oral small molecule targeting key underlying mechanisms of mitochondrial disease based on the drug’s unique triple mode of action: redox modulation to help restore the cell’s metabolism, radical trapping preventing ferroptotic cell death, and mPGES-1 inhibition resulting in anti-inflammatory effects.

The placebo-controlled, double blind KHENERGYC study is underway at internationally recognised mitochondrial disease centres in Europe. First patients are being dosed at the Radboud Centre for Mitochondrial Medicine, Nijmegen, The Netherlands. The 6-month study, supported by Dutch Patient Foundations and an EFRO Grant (PROJ-00582) will investigate the effect of sonlicromanol in 24 children (from birth to 17 years) with genetically confirmed mitochondrial disease of which the gene defect is known to hamper the functioning of one or more oxidative phosphorylation system enzymes and who are suffering from motor symptoms. The study’s primary objective is to evaluate the effect of sonlicromanol on motor function using a range of validated, quantitative assessments including the Gross Motor Function Measure-88 and the Nine Hole Peg Test.

Prof. Dr. Jan Smeitink, Chief Executive Officer at Khondrion, said: "Mitochondrial diseases present a serious unmet medical need in children, with those diagnosed experiencing a rapid progression of symptoms that can have a significant impact on their quality of life and having a substantially reduced life expectancy. Despite advances in the understanding of mitochondrial disorders, treatment options are extremely limited and, to date, largely consist of supportive care. There is an urgent need for treatments.”

“At Khondrion we don’t want to leave any mitochondrial disease patient behind, that’s why this paediatric study is important so that, together with our ongoing phase IIb study in adult patients, we can truly understand the disease-modifying potential of sonlicromanol across all age groups.”

Read full Press Release

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MetabERN recommendations for all rare inherited metabolic diseases patients and caregivers about treatment adherence during the COVID-19 emergency

The European Reference Network for Hereditary Metabolic Disorders (MetabERN) have issued advice to patients with Inherited Metabolic Diseases (IMDs). 

Experts at MetabERN recommend that IMD patients are considered as high priority to be vaccinated against COVID-19, and that patients should have the vaccine when offered. Read more

Many IMP Member organisations have information about COVID-19 in their specific country or region. Please visit our Member page and click on the logo to visit your local organisation.

To read the Mitochondrial Medicine Society’s latest (March 2021) response to COVID-19 vaccines, click here.

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What is the CureMILS Project?

The project - full name 'CureMILS - A reprogramming-based strategy for drug repositioning in patients with mitochondrial DNA-associated Leigh syndrome' - is an exciting research project which aims to develop therapies for mitochondrial DNA-associated Leigh syndrome (MILS).

Professor Prigione explains what the project involves in this 3 minute video.  

IMP is a partner in the project, which is part of the European Joint Programme on Rare Diseases.

Click to watch.

Read more about the project.

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New LHON Webpage & German Translation of Brochure 

IMP is pleased to publish a new webpage dedicated to LHON, as well as the German translation of the LHON Brochure. Thank you to Lennart Sass at LHON Deutschland e.V. for the translation. The brochure, originally published in late 2020, is also available in Italian and English. 

LHON is a type of mitochondrial disease, which causes acute vision loss. The onset is generally in adolescence or early adulthood. Vision loss starts with no warning and frequently progresses very quickly from one eye to both.

There are many LHON patient organisations around the world as well as national mito patient organisations that support people with LHON.

Visit the LHON page.  

© 2022 Int. Mito Patients