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.

Please find below the official pressrelease by Khondrion

Khondrion presents phase II KHENERGY trial data

Data supporting Phase III development of KH176 in mitochondrial disease

Nijmegen, The Netherlands - Khondrion, a leading clinical-stage pharmaceutical company focussing on small molecule therapeutic for mitochondrial diseases, today (22.11.2017) announced results from its KHENERGY study, a Phase II exploratory trial with oral KH176 in the m.3243A>G multisystem mitochondrial MELAS and MIDD syndromes and mixed phenotypes. The results of the trial were presented by Prof. Jan Smeitink, Khondrion's CEO, at the Dutch Life Sciences Conference.

 

This year, as in the last few years, the Global Mitochondrial Disease Awareness Week was held, in the third week of September. The GMDAW is focussed on creating awareness, education, fundraising and advocacy efforts with respect to mitochondrial disease all around the world. In many countries national events were organised with this aim. This varied from walking- and biking tours to raise funds, to patient information days, and general information campaigns.

For 2017 IMP wanted to set the GMDAW globally on the map by beating the world record of lighting out the most monuments/landmarks ever. Of course in green light, the colour which represents the disease best. The Guinness World Record was held with 38 monuments. The goal for IMP was to light out 55 monuments for 24 hours worldwide in the night of the 16th of September. The number 55 was chosen because it was 55 years ago that the first mitochondrial diagnosis was set.

© 2018 Int. Mito Patients