International Mito Patients is a network of national patient organizations involved in mitochondrial disease. Mitochondrial disease is a rare disease with a limited number of patients per country. The national patient organizations which are a member of IMP each are active and powerful in their own countries. By joining forces IMP can represent a large group of patients and as such be their voice on an international level.

 

Elja van der Veer (The Netherlands)

Chairman: Elja van der Veer (The Netherlands)
Main responsibility: general management, project harmful drugs for mito’s
Contact: This email address is being protected from spambots. You need JavaScript enabled to view it.

Piero Santantonio (Italy)

Vice-Chairman: Piero Santantonio (Italy)
Main responsibility: project IMP patient register, deputy chairman
Contact: This email address is being protected from spambots. You need JavaScript enabled to view it.

Emma Delrey (France)

Secretary: Emma Delrey (France)
Main responsibility: project IMP funding
Contact: This email address is being protected from spambots. You need JavaScript enabled to view it.

Hanka Meutgeert (The Netherlands)

Treasurer: Alfons Heetjans (The Netherlands)
Main responsibility: IMP finances
Contact: This email address is being protected from spambots. You need JavaScript enabled to view it.

Carsten Gamroth (Germany)

General member: Carsten Gamroth (Germany)
Main responsibility: project quality of life study mito’s
Contact: This email address is being protected from spambots. You need JavaScript enabled to view it.

Philip Yeske (USA)

General member: Philip Yeske (USA)
Main responsibility: project IMP patient register
Contact: This email address is being protected from spambots. You need JavaScript enabled to view it.

 

 

Patient advocacy groups and networks of pag's (such as IMP) are active in many fields. Although pag's do not have a political character they are sometimes faced with controversial topics. Such topics may entail political issues, ethical discussions, dramatic individual situations, or conflicts of interest. 

IMP is a network of national patient organisations/groups. These national pag's have their own policies and points of view. IMP in itself houses many different opinions and offers room for all those differences.

However, there may be a need within the mitochondrial community to be clear and transparant about certain subjects. If this is the case, IMP will issue a policy paper and you will be able to find them here.

 

 

International Mito Patients has the following mission:

TO INCREASE QUALITY OF LIFE FOR PEOPLE WITH MITOCHONDRIAL DISEASE BY FACILITATING CROSS-BORDER COOPERATION AND COLLABORATION AMONG NATIONAL PATIENTS'ORGANIZATIONS.

The objectives following from this mission are as follows:

  1. To share best practices, information and knowledge, in order to:
    - promote early diagnosis;
    - develop appropriate care pathways;
    - clinically manage the disease;

  2. To be an international bridge between patients, clinicians, scientists, industry and policy-makers;
  3. To promote and advocate for speedy development of treatments and cure.

At this moment there are 12 full members of IMP. All are active national patient organizations representing patients and their families involved in mitochondrial disease. Together they form the voice for at least 6,000 mitochondrial patients worldwide. And this voice can only become stronger and louder once other organizations join IMP.

IMP knows two kinds of memberships:

  1. Full membership is open to national patient organizations which represent patients and their families involved in mitochondrial disease in their own country.

  2. Associated membership is open to groups, organizations and individuals, not being national patient organizations, but strongly involved in mitochondrial disease.

If you are interested in joining do not hesitate to contact us on our contact page.

International Mito Patients has officially been granted the so-called ANBI status, the status of a charity organisation, by the Dutch taxation authorities. For more information see: click here

Regulations to comply to the ANBI status require the following Information to be recorded on our website:

Mission and Objectives

International Mito Patients has the following mission:

TO INCREASE QUALITY OF LIFE FOR PEOPLE WITH MITOCHONDRIAL DISEASE BY FACILITATING CROSS-BORDER COOPERATION AND COLLABORATION AMONG NATIONAL PATIENTS'ORGANIZATIONS.

The objectives following from this mission are as follows:

To share best practices, information and knowledge, in order to:
- promote early diagnosis;
- develop appropriate care pathways;
- clinically manage the disease;

To be an international bridge between patients, clinicians, scientists, industry and policy-makers;

To promote and advocate for speedy development of treatments and cure.

In order to achieve this mission and the concurring objectives IMP collects funds to finance projects aiming at the development of care paths, of therapies and medication, and of treatment methods, with the purpose of improving the quality of life of patients with mitochondrial disorders.

Members

IMP is a network organisation with national patient organisations involved in mitochondrial disease as its members. In 2016 there are 12 full members: AEPMI (Spain), AMDF (Australia), AMMi (France), BOKS (Belgium), DGM (Germany), The Lily Foundation (UK), MDC (UK), MitoCanada (Canada), Mitocon (Italy), UMDF (USA), Spierziekten Nederland (The Netherlands), VKS (The Netherlands), There is positive interest from other countries to join. The members all contribute financially to IMP so that there is a small internal budget for organisational and administrative purposes.

Management and Organisation

IMP is run by its members. They take all important decisions. The decisions are carried out by the board. The members of the IMP board are authorized to take daily decisions in order to manage all activities and projects. The board of IMP exists of the following 5 members, who have been elected by the IMP members and appointed for three years:

Chairman: Elja van der Veer (The Netherlands)
Main responsibility: general management, project harmful drugs for mito’s

Vice-Chairman: Piero Santantonio (Italy)
Main responsibility: project IMP patient register, deputy chairman

Secretary: Emma Delrey (France)
Main responsibility: project IMP funding

Treasurer: Alfons Heetjans (The Netherlands)
Main responsibility: IMP finances

General member: Carsten Gamroth (Germany)
Main responsibility: project quality of life study mito's

Remuneration Policy

Management/board and organisation operate on a voluntary basis, they are not paid, do not receive salaries. This also applies to designated project managers who are responsible for running specific defined projects. IMP does not employ paid staff.

General costs, such as travel- and accommodation costs, and administration costs which are directly related to activities of the board or to events of IMP can be reclaimed. The policy is to make use of this arrangement in moderation and with great restraint.

Whenever possible, IMP aims at avoiding costs by for its activities, i.e. annual member meetings at free-of-charge conference locations, unpaid website development, electronic communication as much as possible, etc. If there are costs, these are paid from the internal budget built up of the annual financial contribution by the member organizations of IMP.   

The policy to avoid costs and, if there are costs, to pay them from the general internal budget enables IMP to spend 100% of its sponsored funds to its projects. For specific projects separate funding is searched for, and these funds are managed and monitored by the designated project managers.

Projects 2014/2015/2016

At the annual member meetings of the past years the following projects have been decided on and developed:

1. IMP worldwide patient registry: a non-clinical, patient-owned databank of mitochondrial patients all over the world. To go online mid 2017. Up to now small funds were received for this project. In the implementation phase limited funding will be done from the internal IMP budget, external funding will be sought.

2. IMP quality of life study: an international online study on the daily lives of mitochondrial patients, in cooperation with a renowned German psychological research institute; in progress. The start is of this project was funded by the German DGM. Results of the pilot in Germany will be published in 2017. Dependent on national funding through external grants the QOL project will be expanded to other countries.

3. IMP funding of research: a small fund to finance studies focussing on care paths and improvement of daily lives of patients. Based on a pilot study the first IMP grant will go to a research project which aims at developing an international standard for a therapy for muscular pains in mitochondrial patients. Funding to be expected, amongst others, from MEET (http://www.itn-meet.org/index.php?id0=MEETers_run_for_IMP Further funding needed.This project has been delayed until it can link to the QOL project finalised in Germany. In this way the results of the study will directly be translated into further research.

4. IMP list of drugs which are potentially harmful for mito’s (in cooperation with the NCMD, The Netherlands,). Based on scientific publications. Online on this website. The list is updated every 6 months.

Continuous Activities

Additional to the projects there are a number of activities which are carried out on an ongoing basis, related to IMP’s mission and objectives:

  • Build network with researchers and clinicians (attending conferences, personal visits, supporting activities, organising meetings, participating in Euromit)
  • Ongoing support for grant applications regarding studies into mitochondrial disease (active role, responsible for work package, in advisory committee, tactic support)
  • Liaison for individual mitochondrial patients all over the world (Poland, Brazil, Bulgaria, Ireland, Pakistan, Algeria, etc. etc.), mainly through IMP’s Facebook page.
  • Support national campaigns if requested (UK lobby for new legislation, national patient information days, contributing to MEET conferences in Italy)

Address and Bank

International Mito Patients

Burg. Uilkensstraat 21
2861 AD Bergambacht - The Netherlands
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Chamber of Commerce registration: 53416104
RSIN (taxation number): 8508.72.236

Bank: ABN-AMRO, Postbus 749, 3000 AS  Rotterdam, The Netherlands
BIC-code: ABNANL2A
IBAN: NL92ABNA0414343522

Financial Accountability

IMP’s finances can be divided into:

  • internal budget (revenues from member contributions, administration costs, etc.)
  • funds from sponsors to be dedicated to special projects

IMP’s policy is to be transparent about all financial activities. The annual reports can be downloaded

Annual report 2016
Annual report 2015
Annual report 2014
Annual report 2013

As per the 25th of November 2015 the Dutch taxation authorities have officially awarded the status of Algemeen Nut Beogende Instelling (ANBI) to International Mito Patients. Click here for the official decision.

Make us stronger!

If you wish to support IMP, you may think of the following:

  1. Make a donation, earmarked or general

  2. Tell us your story

  3. Connect us with your national organisation to join IMP

  4. Give us your feedback, it is more than welcome

  5. Enrich us with new ideas

  6. Provide us with information

For donations:

Bank: ABN-AMRO, Postbus 749, 3000 AS  Rotterdam
BIC-code: ABNANL2A
IBAN: NL92ABNA0414343522

Accountholder: International Mito Patients, Bergambacht, The Netherlands

Please mention IMP as the beneficiary

Address of the bank:

ABN-AMRO
PO Box 749
3000AS Rotterdam

For ideas and information contact us on our contact page.

© 2017 Int. Mito Patients