Skywheel illuminated in green for Light up to Mito

Light Up for Mito - 24 September 2022

Are you Lighting Up for Mito this year? Invite local landmarks and buildings to lit up in green on 24 September to raise awareness of mito. There are lots of resources on our website, including template letters to monuments, media releases and messages for participating monuments to share.

Find out more and register your landmarks at the World Mitochondrial Disease Week website. 

Or email This email address is being protected from spambots. You need JavaScript enabled to view it. for more information.


Genomit logo

The Lily Foundation in the UK will be the first patient organisation to launch the Global Mitochondrial Disease Patient Registry in 2023, with other organisations and countries to follow closely behind.
Progress on the development of the Registry is continuing. The platform has been agreed with the Geomit Consortium, ensuring that deidentified data can be matched with that from the Global Clinical Mitochondrial Disease Registry. This will provide researchers with a unique global clinical and natural history dataset.
Details of the Governance Committee are being developed and discussions are taking place regarding the roles and responsibilities of each partner.
Work Package 2 (IMP, The Lily Foundation, Mitocon, AMMi, DGM and key experts) will seek additional input from Regulators regarding its progress. We looking forward to connecting with the pharmaceutical industry to update them on the developments towards the end of the year.
Thank you to our members who have indicated an interest in running the Patient Registry in your country. We are excited to see this project becoming a reality.

Click here for information on the Global Mitochondrial Disease Patient Registry.

Photo of a Sleeping child


PowerMe Study

Severe fatigue in children and adolescents with a mitochondrial disease is the focus of the PowerMe study.

Fatigue is a common symptom across many of the mitochondrial diseases and can have a life changing impact. There are no medications to reduce fatigue. It is possible that severe fatigue may be helped through physical, occupational and psychological treatments.

The PowerMe study is a blended cognitive behavior therapy targeting fatigue in children and adolescents with mitochondrial diseases. The intervention aims to reduce perceived fatigue by targeting fatigue-related conditions and behaviours.

The results of the study are being analysed and we look forward to sharing them when published.


IMP is proud to have participated in this project. IMP is committed to contributing to the best care of mito patients around the world.


To read more, download:

Blended cognitive behaviour therapy for children and adolescents with mitochondrial disease targeting fatigue (PowerMe): study protocol for a multiple baseline single case experiment, Klein et al in Open Access.

Cognitive functioning and mental health in mitochondrial disease: A systematic scoping review , Inge-Lot Klein et al in Neuroscience and Biobehavioural Reviews

Ukrainian Flag

IMP supports the international mito community and stands with all those affected by conflict. 

As a member of EURODIS-Rare Diseases Europe, IMP supports its efforts to aid people with rare diseases, including mitochondrial diseases, in Ukraine.
Visit the Ukraine - Rare Disease Resource Centre on EURODIS-Rare Disease Europe's website
Information and support

Rare Diseases of Ukraine's Facebook page contains information in Ukrainian. Please contact them for help - email: This email address is being protected from spambots. You need JavaScript enabled to view it., tel: +380674658142.

Adrian Goretzki is offering direct support to Ukrainians affected by rare diseases.

Emergency Response Coordination Centre: Assistance offered through the EU Civil Protection Mechanism - map of where help is offered.

Information about support available in:

Romania -

Latvia - 

While IMP does not have a member in Ukraine, we will do all we can to help Ukrainians affected by mito access the support they need. 

Rare Disease Day 2022 Poster

Rare Disease Day 2022

What is rare disease day?

Rare Disease Day is the official international awareness-raising campaign for rare diseases which takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

Rare Disease Day was launched by EURORDISRare Diseases Europe and its Council of National Alliances in 2008.

How to show your support for rare disease day

Raising awareness of what it means to be rare There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care and social opportunity.

The key message for Rare Disease Day 2022 is SHARE YOUR COLOURS!

IMP supports Rare Disease Day and encourages everyone to get involved in raising awareness. 

Watch the Rare Disease Day 2022 video.

Screenshot from Rare Disease Day video

Find out more at 

Don't forget to use #RareDiseaseDay in your social media posts.

© 2023 Int. Mito Patients