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.

 

 

 

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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.

 

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Work Package 2 Partners

Global Mitochondrial Disease Patient Registry 

A patient-driven independent registry, where data are entered, stored and managed by the patients themselves but are also linked to the clinician-driven global registry.

The Global Mitochondrial Disease Patient Registry is part of the GENOMIT project.

 


Work Package 2

The Registry is being created through GENOMIT's Work Package 2 group. WP2 is coordinated by IMP in close cooperation with Mitocon in Italy, The Lily Foundation in the UK, AMMi in France and DGM in Germany.

 


Why do we need a global patient registry?

Picture of yellow tulips with a single red flower

Even the most accredited research centers often only have a few dozen, sometimes even less, patients suffering from rare or very rare syndromes. These numbers do not allow for reliable data to be produced regarding specific pathology.

A shared database, on the other hand, can collect and concentrate a wealth of information and knowledge and represents an indispensable tool for any development in the field of medical research.

The Patient Registry will collect information on quality of life, as well as having information on the needs and requirements that the daily management of mitochondrial pathologies requires of relatives and caregivers.

This information will help to:

  • Identify/characterise patients - it will become an invaluable repository of natural history, quality of life and clinical data
  • Recruit for clinical trials
  • To gain as much knowledge and understanding of mito patients and their families and become the authority on understanding the burden of these diseases
  • Engage and inform the community - recruit new patients/patient associations into IMP - particularly in regions where patients don’t have access to patient organisations, such as Russia, China, Africa, South America, etc.

 


Who is the Registry for? 

This patient registry will be an important tools for mito patients, as well as the data being invaluable to stakeholders, such as patient associations, clinicians, researchers, politicians and public health decision-makers and of course the pharmaceutical industry.

The EMA have stated that patient registries are invaluable data sources on diseases and their treatments.

 


We are aiming to create…

  • A global platform where patients from around the world can register and insert their own data about their disease, their needs and their quality of life
  • A transparent and robust set of rules for data use
  • A connection with the clinical registry – so that data can be shared with doctors, and PROMs can be validated with patients and clinicians

 


Proposed Features

Hello in multilanguagesThe Patient Registry will be implemented as a separate, independent sub-study within the global clinical registry platform.

It will be managed and completed by patients. Patients can log in independently from doctors and insert their own data (PROMs and QoL or other surveys).

Multilingual function: the register will be available in different languages and patients will be able to use their own language to enter the requested data.

For defined projects, stored information can be shared between sub-studies (global registry/patient registry) and/or the user-groups (clinician/patient).

We will have a Policy of Conduct for data sharing inside the GENOMIT Consortium and outside - ie with pharma industry and other research groups.

Privacy is critical. Patients will sign consent forms prior to data being entered. 


For more information about the Global Mitochondrial Disease Patient Registry, please contact us.

 

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