Annual report of the European Myeloma Platform 2007

Report of the EMP Board of Directors in behalf of the Annual General Meeting, To be held on May 30, 2008 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 patient representatives 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.

EMP MEMBERS

Jan. 1, 2007:

* MMSÖ: Multiples Myelom Selbsthilfe Österreich, Austria, represented by Ilse Hein,
* DMF: Dansk Myelomatose Forenings, Denmark, represented by Peter Randlov
* MKgS: Myelom Kontaktgruppe Schweiz, Switzerland, 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,
* PMM NRW, Nordrhein-Westfalen , Germany, represented by Rolf Pelzing
* Morgane Yvon, France, individual member.

Dec. 31, 2007:



* MMSÖ: Multiples Myelom Selbsthilfe Österreich, Austria, represented by Ilse Hein,
* DMF: Dansk Myelomatose Forenings, Denmark, represented by Peter Randlov
* MKgS: Myelom Kontaktgruppe Schweiz, Switzerland, 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,
* PMM NRW, Nordrhein-Westfalen, Germany, represented by Rolf Pelzing
* APLL, Portugal, associate member, represented by Joao Salazar Leite
* Morgane Yvon, France, individual member.

Board of Directors

Composition on Jan. 1 2007:

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

Composition on Dec. 31, 2007:



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

Management Team

Composition on Jan. 1 2007.

* Chairperson: Ilse Hein, Austria
* Vice-chairperson: Rolf Pelzing, Germany
* Treasurer: Johan Creemers, Belgium
* Secretary: Lia van Ginneken, The Netherlands
* Special task Counsellor: Doris Mayerboeck (Austria).

Composition on Dec. 31, 2007.

* Acting Chair-person: Rolf Pelzing, Germany
* Vice-chair: vacant
* Treasurer: Johan Creemers, Belgium
* Secretary: Lia van Ginneken. The Netherlands
* Special task Counsellor: Doris Mayerboeck (Austria)
* Special permanent counsellor: Greetje Goossens (Belgium).



In the year 2007, the management team (MT) has met 5 times.
Jan. 19, Brussels; May 5, Brussels; July 19, Genk;
August 21, Brussels, Nov. 9, Weert.

Communication between members of the MT, the Board of Directors and general members was mainly via e-mail contact, by telephone and during international meetings where often several EMP members were present.

EMP OFFICE

Thanks to the generosity of UZ Brussel (Prof. van Camp and Prof. Schots, Dept. of Hematology) we were able to start our office in Brussels with Sonia Goossens as our office secretary as from April 1 2007.

AGM 2007

On June 1 our first Annual General Meeting took place in Brussels, sponsored by UZ Brussel. All member organisations, except MKgS Switzerland (Ruth Bähler) and PMM NRW Germany (Rolf Pelzing), were represented. Home rules of EMP were adjusted. Application for associate member by APLL Portugal was accepted, so was full-membership of MPNS Scotland. However the latter organisation ceased to exist a few months after the AGM and for that reason has withdrawn from our membership list. (see the minutes of that meeting for more information).
In our workshop on the second day, June 2, the main issues discussed were: Aims of EMP, priorities, co-operation with different partners, web-site and PR in general. (see also the minutes of the workshop for more information).

MEMBERSHIP

EMP is a member of the following organisations:
European Cancer Patient Coalition (ECPC).
Eurordis, the European Organisation for Rare diseases.

ACTIVITIES

1. Co-operation with Partners.

During the year 2007 our co-operation with our partners has intensified considerably.
Short descriptions in alphabetical order:

European Cancer Patient Coalition (ECPC).
As member of the ECPC, EMP has been closely following their activities on a European level taking an active part whenever possible. EMP has represented the ECPC at several EMEA meetings: Greetje Goossens represented the ECPC at the EMEA meeting on Revlimid on Jan. 29 2007, Ilse Hein represented the ECPC at the EMEA meeting on thalidomide on May 30, and on Nov. 5. (see also under EMEA).

ECPC’s Annual General Meeting, linked to the ECCO 14 conference in Barcelona, was attended by Greetje Goossens and Lia van Ginneken.

European Hematology Association (EHA).
EMP shared a stand with the IMF at the EHA meeting, June 2007 in Vienna.
Attempts to intensify our co-operation are being made.

European Medicines Agency (EMEA).
The year 2007 was an intensive year with respect to authorisation procedures of several medicines which are very important for MM patients. Advisory meetings for patients and victims were part of these procedures. EMP was represented in all organised meetings.

Revlimid/Lenalidomide;

Jan. 29, 2007. Ilse Hein represented EMP. This meeting focussed at all the comments and questions which were posed by patients and victims with respect to the RMP, Package leaflet and labelling for the marketing authorisation of Lenalidomide for application in MM and Myelodysplastic Syndrom. Lenalidomide was officially authorised in June 2007. Consequently this medication became available in all EU member states.

Thalidomide.

May 30, 2007. An advisory meeting of Patients and Victims on the authorisation of Thalidomide took place. EMP was represented by Greetje Goossens , EMP also represented the Myeloma Euronet (by Greetje Goossens) and ECPC, (by Ilse Hein) , at this meeting. Nov. 5 2007: Second consultation meeting of victims and patient organisations in the CHMP Assessment of the application for marketing authorisation for Thalidomide Pharmion. EMP was represented by Rolf Pelzing, while some of our member organisations were represented by EMP members as well: CMP by Greetje Goossens, MMOE by Andrea Korherr. Ilse Hein represented the ECPC.

In addition to this, two of our members, Rolf Pelzing and Greetje Goossens have received training from EMEA as ‘Patient and Consumer Experts’ for the review of EMEA documents. They both regularly collaborate with EMEA on this matter.

European Myeloma Network (EMN).
In 2007 discussion took place with EMN about co-operation with EMP in the future. Plans for implementing activities are being developed.

European Organisation for Rare Diseases (Eurordis).
Close co-operation took place with Eurordis particularly in connection with the authorisation procedures of Lenalidomide and Thalidomide, in which Francois Houyez played a very important supportive role.

The Annual General Meeting of Eurordis was attended by Greetje Goossens on May 4th in Paris.
Mrs. Goossens also attended the CAPOIRA workshop “Gaining access to Rare Disease Research resources” on May 5, in Paris.
Johan Creemers attended the Eurordis Rare Disease meeting Nov. 7, in Lisbon, Portugal,

International Myeloma Foundation (IMF)
EMP has been trying to structure our co-operation with the IMF.
Our co-operation took place through the following activities:
Sharing of a stand at the EHA meeting in Vienna, June.
A patient and family meeting organised in Paris, September 14.

Myeloma Euronet (Me).
Co-operation took place particularly in the field of authorisation of Thalidomide and Revlimid/Lenalidomide.
EMP (Greetje Goossens) represented Me at the EMEA meeting on thalidomide on May 30.

National Competent Authorities (NCA).
In addition to co-operation on a European level, each EMP member has established contacts with relevant health authorities on a national level in their own countries.
For example, in Denmark and the Netherlands our member organisations (DMF and CKP) were invited by their respective NCA to advice on the implementation process of Lenalidomide.
In Belgium our member organisation CMP was closely involved in a discussion with the Belgian NCA with respect to the implementation of the Risk Management Programmes of Lenalidomide and Thalidomide. The Belgian NCA wants a more strict RMP than the one proposed by the EMEA. We have been advocating for the acceptance of the EMEA-RMP.
In the Netherlands a Dutch patient friendly Risk Management Plan was developed for the local preparation of thalidomide, on the initiative of patients, doctors and pharmacists.

Universiteits Ziekenhuis (UZ) Brussel
UZ Brussel has been very supportive in all our activities.
From April 1, the EMP office is located at the University and our secretarial support is paid by them. Our AGM and several other meetings were sponsored by UZ Brussel.
In addition, advise and support was regularly obtained form Prof . van Camp and Prof. Schots. Prof. van Camp has agreed to be the chair of our Medical Advisory Board (MAB).

2. Public Relations.

Web-site.
The web-site has been taken over by an official web-company. It now has been designed in a way that more than one person can work on it .
The site has become much more eye catching. The address has been changed from www.european-myeloma-platform.org into: www.emp-myeloma.eu.
Links to the member organisation have been established.
However much work still needs to be done. It will be under constant development and improvement under the supervision of Rolf Pelzing.

Representation.
In the year 2007 2 roll-up posters with our aims and activities were developed, one in English one in German. In addition a leaflet/flyer in English, German and French with basic information on EMP have been printed.

3. Participation at Conferences, Seminars, Workshops, Master classes.

In chronological order.

•   IMF International Myeloma Foundation (IMF), February 2007, Los Angelis. Rolf Pelzing attended.
• Symposium CMP ; March 10 2007, Antwerp, Belgium. Johan Creemers and Greetje Goossens were involved in the organisation and attended.
• European Bone Marrow Transplantation (EBMT) Patient and Family Day; March 2007, Lyon, France. Greetje Goossens attended.
• Eurordis (European Organisation for Rare Diseases); Annual General Meeting, May 4 2007, Paris France. Greetje Goossens attended.
• Eurordis (European Organisation for Rare Diseases); CaPOIRA Research workshop, May 4 and 5, in Paris France. Greetje Goossens attended.
• European Hematology Association (EHA); June 2007, Vienna, Austria. Ilse Hein, Andrea Korherr and Rolf Pelzing attended.
• International Myeloma Meeting; June 2007, Kos. Johan Creemers, Ruth Bähler, Greetje Goossens, Ilse Hein attended.
• MM Patient Family meeting-IMF; September 2007, Paris France. Morgane Yvon and Greetje Goossens attended.
• European CanCer Organisation (ECCO); September 2007), Barcelona, Spain. Joao Salazar Leite, Greetje Goossens and Lia van Ginneken attended.
• CMP Symposium MM and WM; Oct. 2007, Gent, Belgium. Johan Creemers and Greetje Goossens were involved in the organisation and attended.
• DGHO (Deutsche Gesellschaft für HÁmatologie und Onkologie) meeting; October 5-9- 2007, Basel Switzerland. Ruth Bähler, Johan Creemers attended.
• Seminar NRW; November 2007, Düsseldorf, Germany. Rolf Pelzing was involved in the organisation. He and Johan Creemers attended the seminar.
• European Conference for Rare Diseases; November 2007, Lisbon Portugal. Johan Creemers attended.
• American Society for Hematology (ASH); December 2007, Atlanta US. Rolf Pelzing and Greetje Goossens attended.
• Open Cancer Conference; 25-2-07, Düsseldorf, Germany. Johan Creemers attended.

4. Organisation of a Medical Advisory Board for EMP.

During the AGM it was decided to organise a Medical Advisory Board (MAB). Activities have been developed in that respect. Each member country has invited two medical specialists to join this board. The Board was near completion by December 31. 2007.

5. Planning of future Symposia.

In 2007 the first start was made for the organisation of 2nd European International Multiple Myeloma Workshop for haematologists, internists and oncologists. Planned for June 28-29 2008 in Graz, Austria on the initiative of our Austrian colleagues MMSO.
A start was made with the organisation of the European Symposium: ‘No Policy without Patients’. Initiated by EMP and our Dutch colleagues CKP, in celebration of the 25th anniversary of CKP. To be held on October 30-31- 2008, in Maastricht, the Netherlands.

FINANCES

Most of our expenditures in the year 2007 were directly financed by our partner organisations, EMP member organisations or by individual members.
e.g.

• EMP office running costs were paid directly by UZ Brussel. So were the EMP Annual General Meeting and the MT meetings.
• Most travel costs for conferences, workshops and symposia were granted by the promoting organisations.
• Other travel costs and some PR materials were directly paid by our member organisations and by individual members.

EMP is very grateful for their contributions.

For an overview of our finances in 2007 see annexes A, B and C to this report.

FOCUS POINTS FOR THE YEAR 2008

In the year 2008 EMP will focus on increasing our members by developing more PR activities. EMP will improve information flow by improving the contents of our web-site so that member organisations have access to relevant up-dated information. EMP will increase funds by setting up sponsor activities and EMP will focus particularly on its advisory role by implementing a Medical Advisory Board (MAB), increasing our co-operation with professional organisations, playing an active role at EU conferences and by publications and interviews.
EMP will focus on the quality of its actions and will safeguard its independence of industry and politics.

April 2008,
Lia van Ginneken-Noordman, Secretary MT, EMP.