Screenshot of LHON Awareness Day event

LHON Awareness Day Event

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Thank you to all the participants and to everyone who watched the event live and on replay. It was a thought-provoking and informative discussion about technology and devices that can improve the lives of people with LHON around the world. Find out more about the devices that work, and about how acceptance of help in the form of assistive technology can have a huge positive impact. 

LHON Awareness Day falls on 19 September each year, is an annual campaign which forms part of World Mitochondrial Disease Week - (19-25 September 2021).

Light Up for Mito - Bulgaria

Light Up for Mito

237 monuments illuminated!

237 monuments around the world were illuminated in green on 25 September 2021!

Light Up for Mito is an annual campaign which forms part of World Mitochondrial Disease Week - 19-25 September 2021.

Thank you to all the monuments and landmarks who participated and to all the mito warriors and their families that secured their participation. Read more or see the photos on Facebook.

 

 

 

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. 

 

Follow us on social media to hear the latest updates.

Facebook, Instagram & Twitter

 

 

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.

 

© 2021 Int. Mito Patients