08-03-07

EMP involved in EMEA Activities

EMP was founded in February 2006 in Vienna. The initiative came from patients of the six countries Austria, Belgium, Denmark, France, The Netherlands, and Switzerland. In the meantime patient groups from Germany and Scotland have joined. EMP is registered as a non-profit organisation under Belgian law. An office will be set up at the Free University of Brussels in the near future.

EMP’s emphasis is on questions concerning

• accessibility to treatment and medication

• access to information on new and current trials

• stimulation and support of research into new methods
  of treatment and medication

• exchange of information between European myeloma
  patient associations.

EMP’s main activities will concentrate on

• collaboration with relevant European and international
  organisations (EMEA, EURORDIS, ECPC, IMF, and others)

• representation in relevant European political and health care organisations

• organisation of symposia, workshops etc.

• provision of information a.o. via a web-site

EMP is a member of the European Cancer Patient Coalition (ECPC) and of EURORDIS, the European Organization for Rare Diseases, and is in close cooperation with the IMF, which has supported EMP financially to get off the ground.

EMP also has become a partner for the EMEA (European Medicines Agency), which is the European counterpart to the FDA, and has received the official recognition as a representative of European myeloma patients. Within the framework of the approval of Revlimid in the EU EMP has represented the interests of myeloma patients on several occasions in June 2006 and January 2007 by stating the patients’ point of view in this matter. In the future EMP will also be involved on a regular basis in the review of documents addressed to patients within the framework of marketing authorisation and renewal applications of drugs. This will mainly concern the evaluation of EPAR (European Public Assessment Report) summaries and patient leaflets from a patient perspective with regard to clarity and comprehensibility. So far EMP is the only blood and bone marrow cancer group involved in this activity, which EMEA has initiated to help patients use drugs correctly.

EMP is still a rather young organisation. All myeloma patient groups in Europe are encouraged to join, because strength also lies in numbers, and it is important to make the voice of myeloma patients heard in European health politics. Membership is absolutely free, more information is available on the website www.european-myeloma-platform.org, which is still in the making and will get a professional new appearance in the near future.