Dids / Achievements

Activities of the European Myeloma Platform (EMP) in 2010.

1.    Collaboration with Health Care Authorities:

- On European level: EMA (European Medicines Agency):

During the year 2010, collaboration with EMA was intensified:
•    EMP representative Greetje Goossens acted as Patient Observer in the Pharmacovigilance Working Party   (PhVWP)
•    EMP was represented in the Patient and Consumer Working Party (PCWP)
•    EMP representatives acted as EMA-experts for the review of documents addressed to patients
•    EMP reviewed and user tested the new website on clinical trials: EudraCT
•    EMP was involved in the benefit/risk discussions of the medicine bendamustine. The medicine received marketing authorisation in March 2010.

- On National level: National Competent Authorities:

Poland:
EMP assisted the Polish MM patient organisations in advocating for the reimbursement of lenalidomide in Poland

Portugal:
“Cycling against lymphoma” event: awareness campaign for hematological diseases

Belgium:
Successful negociations with Belgian Health Care Authorities for access to several rare disease treatements

2.    Collaboration with Research groups

EMP started a structured collaboration with the research group EMN (European Myeloma Network). The focus was on the review of the protocol of EMN clinical trials and the screening of patient related trial documents (informed consent, patient information).  Collaboration was succesful and will be continued in the future.

3.    Collaboration with partners on EU-level:

-ECPC (European Cancer Patient Coalition):
•    Involvment in Action Group for Rare Cancers
•    Involvement in FACE (Forum Against Cancer in Europe)

-Eurordis:
•    EMP is an active member of the DITA Task Force and participated in many of the DITA projects
•    EMP is an active member of the Council of European Rare Disease Federations

-Me (Myeloma Euronet): co-operation and collaboration in several multiple myeloma projects  with Me was intensified

-SCA (Skeletal Care Academy): EMP representative Lia Van Ginneken had a consultancy role in this project as member of the Patient Advocacy Steering Committee

4.    Organisation of workshops, symposia and information days:

EMP organised a workshop for multiple myeloma patient representatives : “Bridging Patients and Researchers” in Brussels (May 21st, 2010).



EMP representative Lia Van Ginneken was member of the organising committee of the European Congress for Rare Diseases, May 13-15, Krakow and co-chaired one of the workshops of the conference.

All EMP Member Organisations organised symposia and patient information days on the topic of Multiple Myeloma and associated treatments in their specific country ,for more  information: see www.emp-myeloma.eu

5.    EMP representatives as speakers at EU conferences, seminars, workshops:

•    Rare Disease Day (RaDiOrg), Feb27, Brussels: Greetje Goossens: “Patients Organisations as partner in Health Care Policy”
•    European Congress for Rare Diseases, May 13-15, Krakow: Greetje Goossens: “Involvement of Patients in Clinical Trials”
•    iPhVWP (informal Pharmacovigilance Working Party Congres, organised by the Belgian Presidency of the EC), Nov 8-9, Liège: Greetje Goossens: “Information to patients”
•    DITA meeting, Nov28, London: Greetje Goossens: “Experience as Patient Observer in the PhVWP”

6.    Participation and representation at conferences and workshops:

EBMT (European Group for Bone and Marrow Transplantation), EHA (European Hematology Association), ASH (American Society of Hematology), DIA (Drug Information Association), DGHO (Deutsche Gesellschaft für Hämatologie und Onkologie),… and many national events in the different member states.

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- EMP is represented in several EMEA committees:

- Representation at relevant European health authorities;

- Collaboration with relevant European and international Organisations;

- Provision of information via the web-site;

- National Health Authorities: each member organisation is active in its own country with respect to implementation of new registered medication, reimbursement problems etc.;

- Organisation of Symposia, workshops etc.
Graz, Austria: June ’08: Second EU Int. MM workshop
Maastricht, the Netherlands: Oct. ’08: ‘No Policy without Patients’: 

Aim: to demonstrate the need and the role of patient organizations', as full stakeholders, in the development of health policies.

The Symposium was followed by a Round Table Conference during which conclusions were drawn in view of a strategy plan.

Result: The final report can be downloaded here.