Front cover of Guide to Setting up a Mito Patient Organisation, showing images of colourful paper cut outs of different people against an image of a network
IMP launches 'How to' guides 

Setting up a patient led organisation can be daunting. With so much to think about, from governance to marketing, it can feel overwhelming. We want to support our members and those thinking about setting up new mito patient organisations by sharing all that we've learnt.
 
Starting with the 'Guide to starting up a mito patient organisation', we will be publishing a series of resources designed to take some of the strain out of figuring it all out .
 
We'd like to thank the Axial Spondyloarthritis International Federation (ASIF) for generously sharing with us the templates of their excellent 'How To' guides. IMP have been working to tailor these to mito patients and seedling patient groups and we will be sharing these via our website and newsletter. 

Our first title 'Guide to starting up a mito patient organisation' is now available. Future titles will include guides on fundraising, how to make best use of social media; and how to set up and manage a website.
 
We'd love to get your feedback. Please have a look and let us know what you need. 

Rare Disease Day on 29th February


On 29th February - the rarest day of the year - we are showing our support for Rare Disease Day. Rare Disease Day is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey.

Worldwide, there are more than 300 million people with rare diseases. Too often, these individuals and families are left isolated and without answers to their medical questions.

National Organization for Rare Disorders (NORD) is the official partner of Rare Disease Day and is asking us all to wear stripes on 29 Feb.  Wearing stripes can start a conversation that helps others learn about the prevalence and challenges of rare diseases.

There are lots of ways to support this great initiative, including downloadable tools to help you get going. For more information, see https://rarediseases.org/rare-disease-day/

IMP Annual Meeting a great success

In June IMP welcomed almost all of its members to its Annual General Meeting in Italy. 

Day one included a demonstration of the Genomit: Global Mitochondrial Disease Patient Registry, which is due to launch later this year in Italy. The Registry will create a global natural history dataset which can be matched with clinical data, making it an invaluable resource for everyone working to improve the lives of people affected by mito.  

Our members had the rare opportunity to present their organisations to each other, providing a valuable insight into how different organisations support their local mito communities, advocate for change, educate healthcare professionals and raise funds to underwrite their work. 

Professor Prigione from Germany presented an update on the CureMILS and Sympathic projects. You can read more about the Sympathic programmes below. We were also joined by Professor Gorman and Dr Butterworth from the Wellcome Centre for Mitochondrial Research, Newcastle in the UK. They thanked IMP for our support of their application to LifeArc for a new rare disease centre.

Professor Spinazolla shared an update on her work as a Professor of Neuroscience and Mitochondrial Medicine at University College London in the UK. She has recently received a £1 million grant from the Medical Research Council of UK to progress research into potential treatments for mitochondrial DNA disorders. 

During the official part of the AGM, Elja van der Veer, was voted onto the IMP Board. Elja is the Founder of IMP. She ran the organisation for 10 years, before retiring a couple of years ago. Elja is an important addition to our Board, with her wealth of experience and knowledge. We are delighted to have Elja working with us again. 

As the day drew to a close, the members split into small groups to workshop the questions of what IMP's priorities and strategic direction should be. IMP is led by our members and so the input we received will be instrumental in how IMP develops. The Board will report back to the members over the coming months on how we will use the outcomes from the workshops to develop our strategic direction. 

IMP members were joined on the second day by people affected by mito, most of the patients and their families were from Italy, with others from countries including Romania and Luxembourg.  

Presentations on topics included mitochondrial donation, which has become a reality in the UK and Australia, thanks to the incredible efforts of the Lily Foundation and Mito Foundation. Italy and Belgium are also looking to make the IVF technique accessible to people affected by mito. 

Professors Rahman and Mancuso provided updates on the latest research taking place in mitochondrial medicine. It was encouraging to hear of developments and areas of research that it is hoped will take us closer to effective treatments and ultimately cures. 

Representatives from pharmaceutical companies shared information on clinical trials and potential new treatments. Providing hope for many patients.

After several years of online Annual Meetings, it was great to meet so many representatives from our member organisations in person in Bologna. With relationships strengthened between organisations, and ideas for new collaborations explored, it was an important reminder of how valuable chatting during a coffee break can be! We are grateful to all of our members who attended in person and online, and for their input into a successful meeting. 

We would like to thank our colleagues at Mitocon for their assistance in organising the meeting, and to our industry partners for supporting the meeting. 

Euromit June 2023

Image of Kira Mann presenting at Euromit 2023. She is standing in front of a blue velvet curtain and standing behind a podium that bears the Euromit logo.

Euromit's Opening Ceremony began as the IMP Annual Meeting concluded. For the first time, IMP’s Chair – Kira Mann – was invited to present to the delegates. To share the patient voice during the Opening Ceremony was a honour and showed how far we, as a family of patient organsations, have come in bring patients to the forefront of mitochondrial medicine. We thank the Euromit organisers for this opportunity. 

There was a constant buzz of excitement around the IMP booth at Euromit. Some of the world's leading researchers and clinicians spoke to our members at the booth. They stood alongside those just starting their careers, patients and families, other non-profit organisations, and representatives from industry. 

During the meeting, IMP representatives met with research project leaders, clinicians looking for ways to support their patients in countries where there isn’t a patient organisation, and representatives from industry to discuss potential funding opportunities. 

Euromit also provided the opportunity to watch unmissable presentations about the latest developments in mitochondrial medicine.  

The Lily Foundation, one of IMP’s members, published a great report on Euromit. 

The Wellcome Centre for Mitochondrial Research and Newcastle University also produced an interesting report. 

Watch: LHON & the Family Webinar and Video

As part of LHON Awareness Day, IMP held a webinar inviting people to share their experiences of living with LHON and the impact on family members.

You can watch the recording of the webinar by clicking here

 

 

 

We have also released a video that helps people gain more insight into the impact of living with LHON, both for patients and their families. You can watch this moving video by clicking on the image or clicking here

To find out more about LHON, read our page

To find out more about World Mitochondrial Disease Week and LHON Awareness Day, click here

© 2024 Int. Mito Patients