PLEASE FIND BELOW A PRESS RELEASE BY THE WELLCOME CENTRE FOR MITOCHONDRIAL RESEARCH AT NEWCASTLE UNIVERSITY

 

Within the Wellcome Centre for Mitochondrial research at Newcastle University we are always searching for new and innovative ways to improve the lives of patients with mitochondrial disease. These innovations can take various forms, such as the development of new technologies  and finding new ways to connect and engage.

 

In the past we have found that the best ideas often come from people with direct personal experience of mitochondrial disease. To this end, we came up with the idea of holding meetings involving patients, researchers and technology designers to come up with ideas. Working with Open lab, also based at Newcastle University, and patient groups, we put together the  MYTO design events.

 

The MYTO events were a series of design events held in the UK, Netherlands and Italy in March and April 2018 bringing together people living with mitochondrial disease, technology designers and researchers. These events resulted in the generation of new ideas to help patients with mitochondrial disease. To view or comment on ideas please see the event webpage at https://myto.ideaboard.co.uk/ alternatively please follow us on twitter at @designingmyto

 

The success of this project was dependent on the co-operation and help of mitochondrial patient organisations, including the International Mitochondrial Patient (IMP) organisation, The Lily Foundation (UK), Spierziekten Nederland (NL), VKS (NL) and Mitocon (IT), who helped us to organise and run the MyTo events across Europe. We would like to say a huge thank you to all the patient organisations and the patients who gave up their time to help make this event a success.

 

Thank You!

                                                                          

 

 

Watch and share this amazing video of Talia and her inspiring parents! The whole world should know her!

https://www.facebook.com/pg/EnergyForLifeSpain/videoTalia

https://www.youtube.com/videoTalia

 

We are pleased to announce that a new member has knocked on IMP's door. Welcome to MitoAction from the United States!

MitoAction is a very active patient advocacy group in the United States. They have a very informative website and undertake many events and activities to support and inform mitochondrial patients and their families. Have a look at their website: www.mitoaction.org

They will find a good connection with our other memberorganisations which organise similar events and activities in their own countries. Sharing knowledge and expertience about this and inspiring each other is one of IMP's goals. 

Raising awareness about mitochondrial disease is another goal which becomes stronger if more patient groups join this on a global scale. One of the reasons why MitoAction approached IMP and why IMP is so enthusiastic about their membership.

The IMP network is growing stronger, not only in the world of patients and their families, but also in the world of research and the clinicians, and in the pharmaceutical world. This network is of the essence in jointly fighting against this terrible disease and stimulating the search for a cure.

We are looking forward to working together with MitoAction!

Rare Disease Poster and other materials can be downloaded now!

28 February 2018 will be the eleventh international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.

For the poster and other materials you can go to https://www.rarediseaseday.org  Here is where you can also find all other info, such as planned events per country.

The 2018 Rare Disease Day will include a social media campaign  #ShowYourRare where you can show your support for people living with a rare disease.

Meet Yara, the face of the poster, who features in the 2018 video and is involved in rare disease research. Research is this year's theme thanks to its important role in the rare disease cause!

Share the poster with all your friends and family. Spread the word about this important day!

 

IMP wishes you a loving, inspiring and hopeful New Year. May all your wishes come true.

We will continue to fight for all mitochondrial patients and we hope that you will join us in this.

© 2018 Int. Mito Patients