LHON Awareness Day logo

 

New LHON Brochure Released to Mark Inaugural

LHON Awareness Day

 

IMP has worked with experts in LHON to produce a brochure aimed at patients, their families and ophthalmologists. Please download it and share it with your eye doctor and with others to help them understand more about LHON.

The brochure is currently available in English and Italian. It will be translated into other languages where possible. The brochures will be available for download from this page soon.

Find out more about the inaugural LHON Awareness Day and the must-watch Facebook Live event taking place on Saturday 19 September. 

LHON Brochure in English 

LHON Brochure in Italian

 

 

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10th Italian Meeting on Mitochondrial Disease

Virtual Meeting

 

Mitocon is pleased to announce the 10th National Meeting on Mitochondrial Diseases, on October 9-10, 2020. Owing to the ongoing situation with Covid-19, it will be organised as a virtual conference.

The meeting will be in English to facilitate participation of doctors and researchers from all over the world, promoting international exchange and collaboration, crucial to fight together against mitochondrial diseases.

The meeting will bring together doctors, researchers and patients and will be a unique opportunity to discuss and update on current understandings of mitochondrial diseases and pathways towards diagnosis and treatment.

Mitochondrial diseases are very complex disorders little known by the scientific community itself until a few years ago. In recent years, giant steps have been taken in the study of the basic mechanisms involved in these diseases and we have finally moved from the diagnosis to the study of possible treatments.

Since its first edition in 2011, the annual Italian Meeting on Mitochondrial Diseases has contributed to this process by gathering the entire community of Italian doctors and researchers around the association of patients and helping to strengthen international partnerships and collaborations, making the whole community grow together and contributing to sharing knowledge and research progress.

The program, drawn up in collaboration with Mitocon’s Scientific Committee, has been designed to inspire the integration of technology and innovation into medical practice. In addition to the natural history of diseases and pre-clinical models, we will talk about the ”high tech” involvement in mitochondrial medicine, robotics and gene therapy. 

A very important session will be dedicated to the research of therapies, with a specific focus on an update on current clinical trials. It will be a unique opportunity for discussion between clinicians and industry and a real possibility for new collaborations.

This 10th edition of the meeting is dedicated to one of the fathers of mitochondrial medicine, Prof. Salvatore Di Mauro, for decades leading one of the first and main research groups on mitochondria at Columbia University in NY (US), which has attracted and built entire generations of mitochondriologists in Italy and worldwide. A special lecture will be dedicated to him for his 80 years.

Please click here to see the programme.

For information please contact: Mitocon Onlus at This email address is being protected from spambots. You need JavaScript enabled to view it. or call +39 (0)6 66991333 / +39 339 2880491. 

 

 

National Association of Patients with Mitochondrial Diseases Logo

Bulgarian Association Joins IMP

IMP extends a warm welcome to its newest member, the Bulgarian “National Association of Patients with Mitochondrial Diseases”.  The organisation is the only group to support people affected by mito in the country.

It was founded in December 2019 by seven parents who have children affected by mito, or who have sadly lost children to this devastating disease.

The association’s primary goal is to have mito included on the list of rare diseases in Bulgaria. The small team of dedicated volunteers who run the association are working closely with doctors who will provide the medical evidence needed to support their campaign. The association is a member of the Bulgarian National Alliance of People with Rare Diseases. 

Map of Europe

Its additional goals are to:

  • Find and support mitochondrial patients in Bulgaria.
  • Enhance knowledge about mito among health professionals and society in general.
  • Create educational and informational campaigns about mito and the problems faced by patients, individually or in collaboration with other organisations.
  • Improve patient access to: diagnostic services, clinical trials, treatments and therapies (including orphan drugs).
  • Create a register of mito patients in Bulgaria.
  • Collaborate with authorities to facilitate social integration and rehabilitation of mito patients.

 

For more information about this exciting new mito association please contact Mr Lyubomir Malamov – Chairman at This email address is being protected from spambots. You need JavaScript enabled to view it. or visit the Facebook page.

 

 

  Visit our Members Page to find out more about the organisations that are collaborating

in support of people affected by mito!

 

 

Word Mitochondrial Disease Week logo

World Mitochondrial Disease Week 2020

World Mitochondrial Disease Week raises awareness of mitochondrial disease (mito) on a global scale through educational, fundraising and advocacy activities.

Word Mitochondrial Disease Week logo

Visit the website to find out more.

Activities include the awareness raising campaign: Light Up for Mito, mass participation walking and running events, and Stay in Bed Day. Educational events are held for medical professionals and patients around the world. 

Facebook provides a vital platform to raise awareness and share news of events and activities taking place. 

IMP coordinates World Mitochondrial Disease Week with assistance from the Mito Foundation in conjunction with its members.   

 

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19 September

We are delighted to launch the first ‘LHON Awareness Day’. 

It is hoped to raise awareness of Leber Hereditary Optic Neuropathy (LHON), a type of mitochondrial disease.

We encourage the global LHON community to raise awareness in their local community and to join the inaugural ‘LHON: One Condition, Many Stories’ event. 

Find out more.

 

 

  Working together we can focus the world’s attention on mito!

However you raise awareness, thank you!

 

Throughout the coronavirus (COVID-19) pandemic, the safety and well-being of all remains everybody's top concern.  While we cannot be together in person this year for Mitochondrial Medicine 2020, the UMDF continues their mission of education, support and research - virtually - and invites you to Power Surge 2020. The UMDF (United Mitochondrial Disease Foundation) is a member of IMP. You are welcome to share this information.

Please save the dates below and join our friends from the UMDF as they bring together the mitochondrial medicine community for this special virtual event. 

Friday, June 26 - Clinical trials and a comprehensive update on the latest in mitochondrial medicine. (CME will be available)

SCIENTIFIC/CLINICAL REGISTRATION

Saturday, June 27 - Patient/Family educational sessions designed to navigate these difficult times with an opportunity to ask questions and engage in conversation through live polling and chat. 

PATIENT/FAMILY REGISTRATION

See the agenda for Power Surge here We hope you will join.  Registration for all sessions is free.  

Make sure to visit the UMDF Power Surge 2020 webpage for updates.

 

 

 

 

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