LHON Webinar

LHON Awareness Week LogoLHON Awareness Day Webinar: Research and Rehabilitation

Thank you to everyone who participated in the Webinar. 

If you were unable to join us live, you can watch the Webinar here

Click to watch Webinar


Meet Associate Professor Wong who will tell us about his exciting research into LHON, and how it could change the lives of many. What is rehabilitation after vision loss? Hear from a rehabilitation expert, Krister Inde about what is possible. 

Thank you to Associate Professor Wong and to Krister Inde for their inspiring presentations. 

For more information on the event and speakers click here.
 

World Mitochondrial Disease Week image

 

How will you mark World Mitochondrial Disease Week this year?

There is so much going on - it's easy to get involved!

 

LHON Awareness Week Logo19 September – LHON Awareness Day
13:00-15:00 CEST - Zoom

Meet Associate Professor Wong who will tell us about his exciting research into LHON, and how it could change the lives of many. What is rehabilitation after vision loss? Hear from a rehabilitation expert, Krister Inde about what is possible. Join in the discussion and ask questions of our experts.
 
The event is open to everyone interested in LHON, including patients, caregivers, researchers and clinicians. 
 
Join our free interactive live virtual event. 

Register now or email This email address is being protected from spambots. You need JavaScript enabled to view it.

For more information on the event and speakers click here.
 

Image of Bulgarian town with green light shone from the monument at the top of the hill24 September – Light Up for Mito
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.
 

 

Social media

Use our hashtags!

#WorldMitoWeek #lightupformito #mitochondrialdisease #mito


Mito Facts
Download and share our Mito Facts on social media. The Mito Fact cards can be used as they are, translated or used as a template. Please share them and raise even more awareness.
 

Faces of Mito
Share your story or the stories of others affected by mito, on social media. Sharing the inspirational stories of our mito communities can be an incredibly powerful way to raise awareness. Please contact This email address is being protected from spambots. You need JavaScript enabled to view it. to share your story.
 

What are you doing to mark World Mitochondrial Disease Week? Let us know so we can shout about your event on social media!


Never miss a thing! Follow Mitochondrial Disease Week on social! 

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More information coming soon! 

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

© 2022 Int. Mito Patients