News

Tuesday, 20 June 2017 18:38

Light up for mito!

Each year, at the third week of September, the Global Mitochondrial Disease Awareness Week is held. The Global Mitochondrial Disease Awareness Week (GMDAW) is marked by awareness, education, fundraising and advocacy efforts to raise awareness about mitochondrial diseases (mito) all around the world. Many events are organised on a national level, but this 'light up' campaign is an international event.

This year the international mito community wants to set the Global Mitochondrial Disease Awareness Week 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 current Guinness World Record for most monuments lighted out (24 hours) is held by Estee Lauder for Breast Cancer Awareness with 38 monuments. The goal for us is to light out 55 monuments for 24 hours worldwide on Saturday/Sunday September 16th-17th 2017. 55 monuments, because in 2017 it is 55 years ago that the first mitochondrial diagnosis was set.

The Guinness World Record organisation has officially recognised the attempt to break the record. And there is a big chance that we are going to make it! There still are many things to organise and communicate but we are getting there.

Watch the world turn green on the 16th of September!

 

 

Questions?

Maureen Latocki (Canada) This email address is being protected from spambots. You need JavaScript enabled to view it.

Rebecca Davis (Australia) This email address is being protected from spambots. You need JavaScript enabled to view it.

Alfons Heetjans (Netherlands) This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Thursday, 16 February 2017 14:05

Euromit 2017 - Last call for registration!

 

Are you interested in the latest scientific developments and research studies regarding mitochondrial disorders? If so, the patient meeting at the international medical congress, Euromit2017, is the place to be. The programme, especially developed for patients and their families, is taking place on Wednesday the 14th and Thursday the 15th of June (two half days), in Cologne, Germany. Presentations are given by leading researchers specialised in mitochondrial disease from all over the world. The programme also offers a great opportunity for patients to ask questions to these specialists. The main language is English but the presentations will also be translated simultaneously in German (headphones). And last but not least the patient meeting is an excellent event to meet other mitochondrial patients.

For more information and actual registration you can go to https://euromit2017.org

If you have any questions, please do not hesitate to contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.

Years ago Euromit started as a purely medical conference for all professionals involved in mitochondrial disease. It soon developed into a large international event, held every 3 years, and professionals working with or for mitochondrial patients were all meeting each other at this conference. Since Euromit2014 which took place in Finland a special patient programme was added. This programme aims at informing patients, families and caretakers about the latest scientific developments and running projects. Scientists summarize the scientific presentation in understandable words. And specialised clinicians and other professionals are available for questions.

Want to go? Register before May 31st at https://euromit2017.org

 

Thursday, 19 January 2017 15:40

Guinness Book of Record for GMDAW?

Each year, at the third week of September, the Global Mitochondrial Disease Awareness Week is held. The Global Mitochondrial Disease Awareness Week (GMDAW) is marked by awareness, education, fundraising and advocacy efforts to raise awareness about mitochondrial diseases (mito) all around the world.

This year we want to set the Global Mitochondrial Disease Awareness Week 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 current Guinness World Record for most monuments lighted out (24 hours) is held by Estee Lauder for Breast Cancer Awareness with 38 monuments. The goal for us is to light out 55 monuments for 24 hours worldwide on Saturday/Sunday September 16th-17th 2017. 55 monuments, because in 2017 it’s 55 years ago that the first Mitochondrial diagnosis was set.

Below some photos of featured in green monuments for earlier Global Mitochondrial Disease Awareness Weeks, to give you an example what we are looking for.

MitoCanada, AMDF Australia and Dutch Mitochondrial Disease Awareness Week will take the lead under the umbrella of International Mito patient’s (IMP) to start up this record breaking goal for the Global Awareness Week 2017,

but we need your help!

We would like to ask you with targeting the right monuments/landmarks in your own country, so that we have global coverage, starting in morning on the 16th in New Zealand and further the day around the globe.

Monuments and landmarks are more and more equipped with a led lighting system, which could be easy switched to a green lighting. You can help use to beat that record, so to contact the owners of these monuments and ask to support us with this challenge by switching the lightning to green at that specific day or even better for the whole Global Mitochondrial Disease Awareness Week.

Our goal is to bring in a substantial marketing budget to the table to generate media attention to this awareness week and our attempt to beat this world record, so also the owners of the momuments/landmarks benefit from that “free publicity” as well. With the hashtag #lightupformito we want to share as much photos of the monuments and our hope will be that the Global Mitochondrial Disease Awareness Week goes viral that week.

So the simple question is: Can you contact the owners of monuments and landmark in your own  country. And if they’re willing to join, make the proper arrangements with them and then share these monuments and/or landmarks with us, latest March, 1st  2017. We will put them on the list for the application at the Guinness book of Record comity.

If you need more information or if you want to share your ideas to raise awareness, please contact one of the undersigned contact persons.

We are all looking forward getting your positive reactions; together we are strong and able to set a record for Mito!

 

Maureen Latocki (Canada) This email address is being protected from spambots. You need JavaScript enabled to view it.

Rebecca Davis (Australia) This email address is being protected from spambots. You need JavaScript enabled to view it.

Alfons Heetjans (Netherlands) This email address is being protected from spambots. You need JavaScript enabled to view it.

 

 

Available online, the official Rare Disease Day poster, is out now! Based on the theme of RESEARCH, the poster embraces the possibilities that research can bring, a bright and hopeful future. The visual also emphasizes the important role that everyone has to play in furthering rare disease research. Let's raise more awareness of rare diseases than ever before, by sharing the poster on all the social media channels and websites that we can!

For the whole information package on Rare Disease Day you can go to http://www.rarediseaseday.org/downloads

 

 

 

Saturday, 07 January 2017 16:06

MEET project big success

  

Last December our friends from MEET organised their final and closing congress on mitochondrial disease in London. After a campaign of almost 4 years the Mitochondrial European Educational Training Project is ending in January 2017. In that period 11 PhD students and 3 post doc students were trained in the mitochondrial disease field, in 9 research centres throughout Europe. Hopefully they all stay committed to the mitochondrial research field. It is inspirational to see how a new generation of researchers grew to be involved in mitochondrial disease! 

IMP was invited to the congress as the energetic MEET’ers also raised funds for IMP with a crowd funding campaign and by participating in many sportive events around Europe. On this website we have been reporting about these.

The congress started with a scientific programme in which the MEET’ers themselves briefly presented their own work. Also, guest researchers gave presentations. Topics covered were the relation between mitochondria and cancer, how mitochondrial diseases and neurodegenerative diseases relate and about the newly developed replacement therapy for mitochondrial disorders. The last topic was dealt with by Prof. D. Turnbull from the Newcastle University.

In the afternoon a cheque of more than 3,000 euros was presented to IMP. A fantastic result of the fundraising campaign by MEET!

All in all the MEET project has been a great success, raising awareness and funds for mitochondrial disease throughout Europe and educating the next generation of mitochondrial researchers. IMP has appreciated all that has been done and welcomes the fact that  the voice of patients is heard by researchers. A follow-up project within the european Innovative Training Network is expected. We will keep you informed.

Once more: thank you MEET!!!

Monday, 21 November 2016 15:54

Rare Disease Day 2017

 

THE COUNTDOWN HAS BEGUN! With only 100 days left until the tenth edition of Rare Disease Day on Tuesday 28 February, rare disease patients and organisations around the world have already started preparing their Rare Disease Day activities and events.

Get involved in Rare Disease Day 2017:

Become a friend of Rare Disease Day – everyone (companies, patients, researchers, healthcare providers and academics alike) can become a friend of Rare Disease Day!

Raise and join hands to show your solidarity with rare disease patients around the world.

Tell your rare disease story on Rarediseaseday.org.

Download the Rare Disease Day logo* to use on your website or at your events and keep an eye on Rarediseaseday.org for the launch of the Rare Disease Day 2017 poster and video!

Hold an event - every year thousands of events take place at hospitals, patient organisations and research institutions across the world. Raise awareness by holding an event with fellow patients, policy makers, researchers or health care practitioners. If you are a patient or from a patient organisation you can post your event on Rarediseaseday.org. You can also see other events taking place.

 

EURORDIS brings together the patient community and the 39 national rare disease alliances that are partners of Rare Disease Day. Since the launch of Rare Disease Day, thousands of events have taken place around the world. The Rare Disease Day campaign started as a European event and has progressively become a worldwide phenomenon, with participation in over 80 countries around the world in 2016.