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There are two types of activities being undertaken by IMP: projects and continuous activities. For projects separate funding is sought, the continuous activities are financed from the running budget of IMP. All decisions are made by the member organisations of IMP. The execution is the responsibility of the board of IMP.

PROJECTS

  1. Developing and establishing an IMP worldwide patient registrer: a non-clinical, patient-owned databank of mitochondrial patients all over the world. The goal is to gain more insight, knowledge and understanding of mitochondrial patients. With the explicit permission from the patients the data can be used by researchers to carry out further studies. A designated steering group within IMP is responsible for the execution of this ambitious project. The steering group reports back to the board on a regular basis.
  2. IMP quality of life study: an international online study on the daily lives of mitochondrial patients was carried out in cooperation with a renowned German psychological research institute. This project was funded by the German DGM, a member of IMP . Results of the pilot in Germany will be published in 2018. The outcomes of this study have already formed the basis for a further QOL study in The Netherlands, focussing on different other aspects and as such adding value. Intervention therapies will be developed so that patients can manage their disease and its implications in their daily life. This study is funded with a huge grant from a Dutch (patient) foundation
  3. Establishing and publishing a list of drugs which are potentially harmful for mitochondrial patients (naturally checked for its medical correctness). This list is a hit on the IMP website and has already proven its value. The list is updated on a regular basis in close cooperation with the Radboud Center for Mitochondrial Medicine in Nijmegen. In 2018 IMP will organise a workshop with a small group of mitochondrial and pharmacological specialists with the goal of improving the list on the basis of the latest scientific insights and empirical experiences. As such the list is empowering patients with good, thorough information.

CONTINUOUS ACTIVITIES

Based on the mission and objectives of IMP there are several activities which are carried continuously/regularly:

Management of the Global Mitochondrial Disease Awareness Week, campaign around the world (green light-up campaign in 2017).

Build network with researchers and clinicians (attending conferences, personal visits, supporting activities, organising meetings, participating in Euromit).

Organising and facilitating workshops with mitochondrial specialists, researchers, and reps from pharmaceutical industry to discuss important issues in the mitochondrial community, such as consensus on outcome measures for trials on mitochondrial myopathy, or sharing experiences with FDA and EMA.

Assisting EMA with presentations from patients with specific mitochondrial disorders (MELAS, Leigh, MNGIE), so that the authorities understand the impact of the disease on daily life and as such will understand why developing and approving drugs is so important.

Ongoing support for grant applications regarding studies into mitochondrial disease (active role, responsible for work package, in advisory committee, tactic support). The scientific committee of IMP is advising the board on these requests.

Supporting ITN’s (Innovative Training Networks) funded by the European Commission to train and educate young scientists/academics into mitochondrial medicine, different aspects (MEET in the past, now MORPH-O-FUNCTION). https://ec.europa.eu/research/mariecurieactions/about/innovative-training-networks_en

Participating in patient advocacy groups for ERN’s ( European Reference Networks are virtual networks involving healthcare providers across Europe) through individual IMP representatives. Two ERN’s involve mitochondrial patients: the one for neuromuscular disorders and the one for hereditary metabolic disorders. More info: https://www.eurordis.org/european-reference-networks

Liaison for individual mitochondrial patients all over the world (Poland, Brazil, Bulgaria, Ireland, Pakistan, Algeria, etc. etc.). Mainly responding to queries through the general IMP mailaddress.

Managing a closed community for mitochondrial patients on Facebook. Patients and families from more than 37 countries have joined this group. This is all about sharing information and experiences. Facebook group: https://www.facebook.com/groups/581355625346442/

Support national campaigns if requested (national patient information days, providing information material in different languages, supporting national information days)

Facilitating bilateral contacts between member organisations, and being a channel of communication and information to and from the memberorganisations.

Managing the internal organisation of IMP.

 

IMP is a member of Eurordis, which has international partners such as NORD and CORD. On their website much information on rare diseases and all kinds of related issues can be found: https://www.eurordis.org/

© 2018 Int. Mito Patients