Photo of bunting

World Mitochondrial Disease Week Events 

19 - 25 September 2021

Symposia for medical professionals, policy makers and patients; sponsored fun runs and walks; patient support meetings; Munch for Mito, aware raising stands, and many other events will take place around the world to mark World Mitochondrial Disease Week. 

 Find out about events happening near you. 

 

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LHON Awareness Day logo

The Importance of Technology for LHON Patients

Sunday 19 September 2021, 17:00-19:00 CET

Join the international LHON community for a free Facebook Live event.

Visit IMP's Facebook page to join the event.

Technology can make an immeasurable difference to someone with LHON. It can enable vision impaired people to maintain independence, perform in jobs that otherwise would be inaccessible to them, excel in education, participate in social activities, and accomplish everyday tasks.

But keeping up with new technology can be challenging and time consuming. Michele Landolfo is an expert on the use of technology by vision impaired people.  He will share key information about how technology can improve the quality of lives of people with LHON.

Michele will be joined by members of the LHON community from around the world who will discuss the impact of technology on their lives. They will share the successes they have had with different technologies.

Want to know if there is an App that will assist you with a particular activity? Interested in how technology can assist in an education or work setting? Is there an App that will help you get from place to place more easily? Post your questions in the chat box during the event and we will answer as many as we can. 

The event will be in English. 

Follow us on social media to hear the latest updates.

Facebook, Instagram & Twitter

 

 

About Michele Landolfo

Michele Landolfo is an expert in assistive technology accessibility, software and hardware devices.  He works at INVAT ((Istituto Nazionale Valutazione Ausili e Tecnologie) National Institute for Evaluation of devices and  Assistive Technology) an organisation which belongs to the Italian National blind Union.  He is a Low Vision Consultant at the  F. Cavazza Blind Institute in  Bologna and an Administrator of the  UniversalAccess.it website,  the reference website for assistive technology for all legally blind people.
 
 
Event joining instructions:
 
Simply go to IMP's Facebook Page at 17:00-19:00 CEST on 19 September and the event will appear in the feed. 
You can ask questions throughout the event. 
The event will not appear in the feed until 17:00 CEST. If you do not see it, please refresh the page. 
 
 
 

LHON Awareness Day is part of World Mitochondrial Disease Week.

LHON Awareness Day is hosted by IMP. Thank you to the members of the LHON EU group who initiated the establishment of LHON Awareness Day in 2020.

IMP 10 Year Logo

10 years in review

 Over the last 10 years IMP’s reach has grown around the world. Here are just a few highlights!  

 We are proud to:

  •  Have 16 incredible patient organisations as members.
  •  Have nurtured strong international networks with stakeholders from the medical world, researchers, industry, EMA/FDA, Eurordis and ERN’s.
  •  Collaborate with international consortium, Genomit, on the development of the first non-clinical global mitochondrial disease patient registry.
  •  Participate in the Leigh’s Syndrome, CureMILS, project.
  •  Facilitate the review and publication of the list of medicines to be used with caution by mito patients.
  •  Host World Mitochondrial Disease Week, including Light Up for Mito and LHON Awareness Day, with support from our member, the Mito Foundation.
  •  Have facilitated a successful study into chronic pain in mitochondrial diseases.
  •  Have developed guidelines to bring issue of chronic pain to clinical settings.
  •  Have participated in the study PowerMe, a blended cognitive therapy to cope with fatigue and pain for 8-18 year olds.
  •  Provide international support services for any patient anywhere in the world, in collaboration with our members: MitoAction and the Mito Foundation.
  •  Organise, facilitate and sponsor workshops on various issues.
  •  Participate in workshops organised by groups such as ENMC and Mitochondrial Expertise Centres.
  •  Manage international Facebook communities, with support from our member, UMDF.
  •  Provide information and news on our website, social media and through our network to the global mitochondrial disease community.
  •  Have raised awareness about mito and IMP through presentations to national and international audiences.

We are grateful to our Founder, Elja van der Veer, who was the driving force behind IMP for 10 years. Elja retired in June 2021. 

IMP is run for, and by, our members and we are sincerely grateful for the many ways they support us.

 

Mitocon - Mitochondrial Diseases Conference 2021

Save the date for Mitocon’s annual meeting, the Mitochondrial Diseases Conference 2021.

15-16 October 2021

The conference will be held in English and will be a virtual event enabling more people to access the thought-proving and inspirational presentations.

It will bring together physicians, researchers and patients from around the world, providing a unique opportunity to discuss the latest research in mitochondrial diseases and the current understanding around potential pathways towards diagnosis and treatment.

 Useful links:

https://www.mitocon.it/mitochondrial-diseases-conference-2021/

https://www.facebook.com/Mitocon/photos/a.350477704989775/4120520327985475/

https://www.linkedin.com/feed/update/urn:li:activity:6818108804299821056

Renske

As she retires, IMP's Founder Elja van der Veer, looks back over the last 10 years...

"Musing about 10 years of IMP I would like to take you back to the very beginning, the origin.

Erik

Years ago my younger brother Erik (pictured left) died of mitochondrial disease. His death was the reason for me to join the small mito-subgroup of the Dutch Muscular Disease Association (Spierziekten Nederland). In the process of Erik’s disease our family did not have proper, solid information about the disease and about research developments (possible drugs or therapies) taking place. I wanted to improve that.

In the years that followed I myself was diagnosed with mitochondrial disease. And in 2010 our daughter Renske (pictured right and on the home page) became ill and turned out to be affected by mitochondrial disease too. She was 15 at the time.

All the sadness, pain and anger that I felt turned into upsetting amazement. Some questions kept coming back in my head: ‘Why doesn’t the world know about this horrific disease? Why doesn’t anybody do something Renske
about this?’

Of course, there were other people in the world involved in mitochondrial disease, groups of patients and their families fighting against the disease and advocating for patients. And researchers and clinicians working on mitochondrial medicine.

But somehow we were not connected. We did not even know what was happening in our neighbouring countries.

Spierziekten Nederland gave me carte blanche to start and try organise an international network for mitochondrial patients. Researchers, clinicians and industry were all already working together on a global scale, so why not patients? We needed an international organisation to represent mitochondrial patients at a worldwide and professional level.

And if there is an international network we can just as well learn from each other, inspire each other and share our knowledge and insights.

So I started approaching the mito ‘colleagues’ in the neighbouring countries: Belgium, Germany, France and the UK. And the response was similar from everywhere: yes, of course we should join forces!

IMP Founding MembersWe met a couple of times informally, and were soon joined by representatives from patient organisations from Spain, Italy and the USA. In 2011 IMP was officially founded, by nine founding member organisations (right), already representing thousands of mitochondrial patients.

Now, 10 years later, we can look back at many successes. Mostly with very few resources and sometimes overcoming our own cultural and character differences. But it is a long list and I am very proud of this.

I will not exhaust you with all our achievements on the list but I do want to mention the fact that by now all the stakeholders in the mito community know who IMP is, what we do and where they can find us. This fantastic international network makes it easy for IMP to initiate studies, participate in research projects, work together on different issues, gather relevant information, educate about the burden of the disease in everyday life and call upon specialists to support individual patients wherever they live.

My personal story, my sadness, sorrow and pain, turned into something worthwhile and powerful. Isn’t that how many patient advocacy groups start?  I feel so lucky to have had the opportunity to meet so many inspiring people. With some I have worked together since the beginning in 2011! We all contributed to a solid and strong organisation.

The story of IMP always makes me think of a famous Irish saying. Let me end with it:

From tiny acorns grow mighty trees."

 

 Farewell to our Founder 

Thank you Elja, for the dedication and passion you have shown over the years. Your relentless advocacy for mito patients has changed the lives of many families around the world. Thank you for your kindness, generosity and inspirational vision for a world where national patient organisations collaborate to improve the lives of all mito patients.

Watch Elja speak about her work with IMP over the last decade as she steps down as Chair of the Board.
Elja's Video 

© 2021 Int. Mito Patients