THE INTERNATIONAL VOICE OF PATIENTS

• Past: isolated islands

• Join forces

• Started informally as network (mitogroups different countries)

WORK TOGETHER

SPREAD AND SHARE

BUILDING BRIDGES

TOGETHER WITH PARTNERS

ALL MITO PATIENT GROUPS MAY JOIN

ESTABLISHED OFFICIALLY IN 2009

IMP Members

• IMP represents approx. 8,000 mitochondrial patients worldwide

• possible new member: Koinobori

Japan

• representatives of the members take all decisions; the board executes

Board members since June 2014:

Elja van der Veer/SN – Chair

Piero Santantonio/Mitocon – Vice Chair

Emma Delrey/AMMi – Secretary

Alfons Heetjans/VKS – Treasurer

Carsten Gamroth/DGM – General member

Activities (1) :

• Three major projects:

1.IMP worldwide patient registry

2.IMP worldwide study of the quality of life

3.IMP funding of research

1. IMP worldwide patient registry: a non-clinical, patient-owned databank of mitochondrial patients all over the world

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; funded by DGM

3. IMP funding of research: a small fund to finance studies focussing on carepaths and improvement of daily lives of patients

Activities (2) :• Managing list of potentially harmful drugs

for mito’s: (clinically monitored, new revision published every 6 months)

• Ongoing support for grant applications regarding studies into mitochondrial disease (active role, responsible for work package, in advisory committee, tactic support)

Activities (3) :• Build network with researchers and

clinicians (symposia, conferences, personal visits, organising meetings, participating in Euromit)

• Liaison for individual patients all over the world. Managing closed community group on Facebook (patients from 36 countries participating)

Activities (4) :• Support national campaigns if requested

(UK lobby for new legislation, providing information, presentations)

• Stimulate awareness and connect patients with others in countries where nothing yet is organised for mito’s (awareness conference with Irish patients)

Activities (5) :

• As of 2016 IMP will be managing the Global Mitochondrial Disease Awareness Week in September www.gmdaw.org

MODEST IN BACKGROUND

PRESENT PROUD

Grazie Mille Mitocon!For more information: www.mitopatients.org