IMP has started to gather a list of existing Facebook communities for mitochondrial patients. Some of these groups are focussing on specific types of mitochondrial disorders. Besides the use of the English language some groups are having another leading language such as Italian, Spanish, Dutch and French. Some groups are organised by individuals and some are organised by patient organisations.

In any case all of these groups are aiming at connecting patients and families involved with mitochondrial disease. They are an online opportunity to meet others and share information, experiences and knowledge about living with mitochondrial disease.

Please feel free to suggest adding another FB group to us: This email address is being protected from spambots. You need JavaScript enabled to view it.

We believe that this new way of connecting people is offering a fantastic opportunity to people to share.

 

 

Facebook groups for patients

 

 

"RUNNING" FOR SUPPORTING THE INTERNATIONAL MITO-PATIENTS NETWORK

MEET fellows launched a crowdfunding campaign on kapipal website for collecting money in order to help the “International Mito-Patients Network” (www.mitopatients.org), to develop a standard therapy for dealing with muscular pain in mitochondrial diseases.

The campaign objective is simple:

Raising awareness about mitochondrial diseases and raising money to help IMP network to develop a standard therapy for dealing with muscular pain in mitochondrial diseases. To launch this campaign, fellows did a simple equation: mitochondria = energy = running, dancing, climbing, biking. Therefore, as young and motivated researchers involved in the mitochondrial field they  run, dance, climb and bike to raise money. Indeed, fellows believe that participating to sport events is a very good way to highlight the importance and the power of mitochondria and thus the importance of helping people that are lacking healthy ones.

Mitochondrial patients worldwide, as represented by International Mito Patients, benefit from a good network between patients, researchers, clinicians and caretakers. And this is also valid the other way around: researchers, clinicians and caretakers benefit from a dialogue with patients. This is the main reason for IMP to work closely together with the MEET Project.

IMP Mission is to increase the quality of life for people with mitochondrial diseases by facilitating cross-border cooperation and collaboration among national patients' organizations. So, it is for this reason that MEET Consortium and MEET fellows will collect money for IMP, emphasizing once again the importance of collaborating among researchers, patients and clinicians, for fighting together!

MEET'S FUNDRAISING ACTIVITIES CONTINUE UNTIL THE END OF THIS YEAR.

PLEASE SUPPORT MEET AND IMP WITH YOUR DONATIONS!!!

MEETers run the Semi de Paris on the 6th of March for IMP

MEET fellows launched a crowd funding campaign on kapipal website for collecting money in order to support the activities of the International Mito Patients organization (IMP) (www.mitopatients.org). Mitochondrial diseases are devastating disorders where the mitochondria, the batteries (energy) of the human body, are not working well. In particular the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems can be affected. The campaign objective is simple: raising awareness about mitochondrial diseases and raising money to help IMP to organize a study into developing a standard therapy for dealing with muscular pain in mitochondrial diseases. A standard which can be used by rehabilitation specialists and physiotherapists all over the world.

When the diagnosis of a mitochondrial disease is made, you (as a patient) may be confronted with medication/drugs to be used. Up to now there is no treatment for mitochondrial disorders. There are no therapies which can solve the primary problem: the lack of energy. However, it is possible to deal with specific complaints with so called symptomatic treatments. For example: a mitochondrial disorder can lead to epileptic seizures, which can be treated with anti-epileptics or in case of cardiomyopathy (when the heart muscle is affected) specific heart medication can be given. Additionally, you can be confronted with medication when you have to undergo surgery or medical investigation and need anaesthesia.

It is of the utmost importance to realise that certain drugs may be potentially harmful for patients with mitochondrial disorders. The cause of the possible larger risk of unwanted negative effects of certain drugs with mitochondrial disorders in general lies in the fact that the drugs have a negative impact on the mitochondrial function. The (group of) drugs of which it is scientifically known that there is an (possible) increased risk on harmful effects with mitochondrial patients are listed in the table below. The kind of scientific evidence for negative effects on the mitochondrial function differs per (group of) drugs. We labelled the (group of) drugs based on the kind of scientific evidence, while we do not aim to restrict important drugs in a condition where treatment options are already so limited. In the majority it concerns experimental data, marked as yellow. These drugs may be used under strict monitoring of side effects. For other drugs scientific evidence concerns experimental data and single case reports, marked as orange. These drugs should be used with caution, discuss with specialist. Or a few drugs scientific evidence is profound, marked as red. These drugs are contraindicated.

The list of potentially harmful drugs for mito's can be found on this website under the menu 'mito disease'. The list is updated every 6 months and is available in English, French and Dutch.

 

Rare Disease Day 2016

Out now! The 2016 Rare Disease Day video!

The video celebrates the special moments in the lives of people living with a rare disease. Read about Elisa, who is living with Williams Syndrome, and her family!
Together, if you Join us in making the voice of rare diseases heard, both on Rare Disease Day and throughout the year, we can collaborate to strengthen the Patient Voice around the world.

© 2019 Int. Mito Patients