Presentation by

Lia van Ginneken – EMP Secretary

&

João Salazar – EMP Chairman

21st February 2009

About EMP

• The European Myeloma Platform is an European institution with no profit making purposes;

• Managed by patients and kinsmen with MM;

• It is a completely independent institution, both political and financially;

• All the workers involved are volunteers.

Goal

The main goal is the defence of patients' rights face to the European Union political decisors.

Background

• The need for a European Platform became clear during the EMEA meetings in the Thalidomide RMP, Nov. 2003, Jan 2004.

• The platform was launched in Vienna, Febr. 25 2006

• The platform was registered in Belgium, June 2006.

• At the moment we have 9 full members, 3 associated members

•MM groups from 6 different countries decided to start this Platform: Austria, Belgium, Denmark, Germany, France, the Netherlands

• During 2007, Portugal and Germany have also joined and are now part of the working group.

EMP's motto

'Patients for Patients'

Mission

Making European patients with Multiple Myeloma defend their interests personally, European wide.

Therefore, the most important thing is to give voice to MM patients all over European institutions and health politics.

EMP's purposes

• Ensure equal access to medication and treatments for all people; • Pass on information to patients concerning the most recent developments, treatment options and clinical trials about MM; • Stimulate and promote the research of new treatment methods and medications through the commercialization of orphan medications and the approval of new ones for the Multiple Myeloma; • Represent MM patients close to European health authorities, aiming to provide them with the best possible treatment and support.• Exchange information between Myeloma patient organizations

Organizational structure

Membership: full and associate members

AGM yearly

Board of Directores: 6 members. > 50% MM patients, meets 1 or 2 times/year

Management Team: chair, treasurer, secretary meets 4 times/year

Medical Advisory Board: 16 members representing all member countries

Office: Free University Brussels

EMP's work

• EMP is represented in several EMEA committees:– Code of Conduct, concerning the relationships between patients' associations and the pharmaceutical industry;– Previously, we worked on a program related to managing the risks of Thalidomide. – We also participated on a program for risk management of Lenalidomide; – Several EMP members received special training from EMEA;

• 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.

EMP's work (cont.)

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: Report with recommendations for all stakeholders involved, will be available next month.

Organizational structure (Criteria for membership)

Full members: - Have the advocacy, support and care of MM patients and their carers as a main objective;- Involve MM patients or their representatives (care givers) in the organizations governing body and committees: At least 50% of the governing body (Board of directors or equivalent) must be MM patient;- Be non-profit;- Be independent of governments, political parties and commercial organizations- Support and demonstrate a commitment to EMP’s vision and mission.

Associate members:- Be a MM related organisation or individual;- Be non-profit;- Support and demonstrate commitment to EMP’s vision and mission.

Future

Develop 5 year strategy plan on the basis of Maastricht Symposium: report + yearly work plans.

Focus will be on:- Establish working relations with sponsors and initiators of clinical trials;- Tackle inequalities in access to treatment, discussing pricing and reimbursement;- Engage in dialogue with regulatory bodies;- Co-operate with other relevant organizations' in order to be able to reach our aims.

Thank you for your attention!!

Contacts:

Lia van Ginneken: l.ginneken@emp-myeloma.eu

João Salazar: j.salazar@emp-myeloma.eu