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Report of the EMP Board of Directors in behalf of the Annual General Meeting, to be held on June 1-2 2007, in Brussels, Belgium.

28-09-07

Annual report of the European Myeloma Platform 2006

Report of the EMP Board of Directors in behalf of the Annual General Meeting,
to be held on June 1-2 2007, in Brussels, Belgium.

Patients for Patients:

The European Myeloma Platform (EMP) was launched on February 25 2006 during the First European Multiple Myeloma Educational Programme in Vienna.
The initiative of founding EMP was taken by MM patients from 6 different countries: Austria, Belgium, Denmark, France, the Netherlands and Switzerland. EMP is the first independent all-patient Myeloma network to bring their common interests to the attention of European policy makers and public.


The composition of the board of directors:

Ilse Hein, Austria
Peter Randlov, Denmark
Ruth Baehler, Switzerland
Johan Creemers, Belgium
Lia van Ginneken, the Netherlands
Morgane Yvon, France

During an EMP meeting on April 20, 2006, Rolf Pelzing, Germany, was installed as a member of EMP. Subsequently the EMP Management Team was established:

Chairperson: Ilse Hein;
Vice-chairperson: Rolf Pelzing;
Treasurer: Johan Creemers;
Secretary: Lia van Ginneken

Special task counsellors of EMP, in support of the management team are:
Doris Mayerboeck (Austria) and Greetje Goossens (Belgium).

June 9 2006, EMP was officially registered in Belgium as an international ‘not for profit’ organisation. This registration was consolidated by an official announcement in the Belgium State Document on August 24 2006, exactly 6 months after our first initiating meeting in Vienna.

Until December 31, 2006 there have not been any amendments to the composition of the Board of Directors nor to the Management Team

In the year 2006, the management team (MT) has met 4 times:
April 20 in Weert, the Netherlands; July 29/30 in Genk, Belgium; October 16 in Weert, November 29 in Brussels.
Communication between members of the MT, the Board of Directors and general members is mainly via e-mail contact and to a lesser extent by telephone.

 

Partners/membership/co-operation:

During this first year EMP became a member of the

  • European Cancer Patient Coalition (ECPC) and of
  • Eurordis, the European Organisation for Rare diseases.

From the beginning of its existence EMP has been closely in contact with EMEA (European Medicine Agency) and received the official status of representing European Myeloma patients within their organisation.

Co-operation has been firmly established with the International Myeloma Foundation (IMF), of whom EMP received a substantial financial grant. (see treasurers’ report).

In November, negotiations with the Free University of Brussels (VUB), were initiated in connection with support for secretarial support and office space.

Other organisations with whom co-operation has been developed are: the MM Research Foundation and the European Haematology Association.
In addition, each EMP member has established contacts with relevant health authorities in their own countries.

 

Activities:

EMP has been focussing in this first year on representation of MM patients towards health policy makers. In accordance with the aims of EMP, accessibility of treatments (Thalidomide, Velcade and Revlimid) have received priority. In addition a lot of time was spent on Public Relations in order to be able to reach out to European patient (groups), health professionals, and other relevant organisations, which is of vital importance.

  1. Representation of European MM patients at health policy level:
    1. "Round Table Meeting on the Regulation of Thalidomide for Multiple Myeloma", Brussels, June 21. This meeting was organised by Eurordis in co-operation with EMP. Five EMP members were present and took an active part in this meeting.
    2. EMEA. In June of this year EMP was officially recognised by the EMEA to represent European MM patients. EMP was invited to attend the "ad hoc advisory committee" on the registration of Revlimid/Lenalidomide, which took place on July 6. Ilse Hein and Doris Mayerboeck, represented both EMP and ECPC at this meeting.
    3. Representation of EMP at a national policy level
    4. On August 17 EMP/CKP representatives met with the Dutch representative of the CHMP/EMEA to discuss the registration procedures of Revlimid/Lenalidomide.
    5. Our Austrian member contacted the Austrian CHMP/EMEA representative to ensure representation of MMSO in further national discussion on Revlimid/Lenalidomide.
    6. During the year 2006, our Dutch member organisation, CKP, has been very actively involved in the development of a national Risk Management Plan for thalidomide.
  2. Public Relations:
    1. A lot of effort is put in the development of the logo, posters, web-site and other PR related materials. Posters and hand-outs were developed in English, German and French. The web-site was first launched towards the end of the year under: www.european-myeloma-platform.org. The web-site will be under constant development and improvement, under the supervision of Rolf Pelzing.
  3. Participation at Workshops, Seminars, Master classes, congresses:
    1. "First European Multiple Myeloma Educational Programme", February 24-26 in Vienna. Eight EMP members took part.
    2. ECPC Master class, May 13-14, Milan. Three EMP representatives, Ilse Hein, Ruth Baehler, Siebe Homminga, enrolled.
    3. IMF Support Group Leaders Retreat, May 18-21, Arizona, USA. Three EMP management team members, Ilse Hein, Rolf Pelzing, Lia van Ginneken, attended this workshop on invitation of IMF
    4. EMP was represented with a stand at the European Haematology Association (EHA) meeting in Amsterdam, the Netherlands, June 16,17,18.
    5. Rolf Pelzing represented EMP at the IMF Patient and Family Seminar, July 7-8, Portland, Oregon (USA).
    6. Morgane Yvon was actively involved in the organisation of the 4th IMF patients & familyMM meeting, Sept 8, Paris (France).
    7. "Eerste Vlaams Symposium for Leukemie en Lymfoom Patienten" ("First Flemish Symposium for Leukemia and Lymphoma Patients"), September 16. Two EMP members, Johan Creemers, Lia van Ginneken, did participate.
    8. Slovenian Summit: ‘United Against Cancer’, November 3-5, Ljubljana, Slovenia, organized by ECPC. Attended by two EMP/CKP representatives, Marianne Muller, Lia van Ginneken.
    9. EMP was represented with a stand at the DGHO Congress, November 4-8, Leipzig, Germany.
    10. On December 19, Johan Creemers and Greetje Goossens represented EMP at the "1re Journee Nationale d'nformation" organised by "L'Intergroupe Francophone du Myelome" in Brussels.

 

EMP Members:

Members on February 25 2006:

  • MMSÖ: Multiples Myelom Selbsthilfe Österreich, Austria, represented by Ilse Hein
  • DMF: Dansk Myelomatose Forenings, Denmark, represented by Peter Randlov
  • MKgS: Myelom Kontaktgruppe Schweiz, Switserland, represented by Ruth Bähler
  • CMP: Contactgroep myeloom patiënten Vlaanderen vzw, Flandres, Belgium, represented by Johan Creemers
  • CKP: Contactgroep Kahler en Waldenstrom Patiënten, Nederland, (MM&WM Patient Association, the Netherlands), represented by Lia van Ginneken, Morgane Yvon, France

 

Members on December, 31 2006:

  • MMSÖ: Multiples Myelom Selbsthilfe Österreich, Austria, represented by Ilse Hein
  • DMF: Dansk Myelomatose Forenings, Denmark, represented by Peter Randlov
  • MKgS: Myelom Kontaktgruppe Schweiz, Switserland, represented by Ruth Bähler
  • CMP: Contactgroep Myeloom patiënten Vlaanderen vzw, Flandres, Belgium, represented by Johan Creemers
  • CKP: Contactgroep Kahler en Waldenstrom Patiënten, Nederland, (MM&WM Patient Association, the Netherlands), represented by Lia van Ginneken, Morgane Yvon, France
  • PMM NRW: Plasmozytom/Multiples Myelom SHG NRW e.V. Germany, represented by Dr. Rolf Pelzing.

 

Membership application was filed for by:

Myeloma People Network, Scotland, (MPNS) represented by Ann Graham

This will be approved at the coming AGM.
 
 
 

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