Annual Report

ANNUAL REPORT 2011

European Waldenström Macroglobulinemia network in brief

The Foundation “ Stichting EWMnetwork” (www.ewmnetwork.eu) has been active since 2009.
EWMnetwork is an umbrella organization for national and regional WM patient support groups. The mission is to enable patients with Waldenström’s Macroglobulinemia (WM) to represent their interests at a European level. EWMnetwork gives WM patients a voice within relevant European political and healthcare organizations.
In 2011 EWMnetwork counts eight affiliates representing a WM patient organization (in Belgium, Denmark, Finland, France, Greece, Ireland, The Netherlands, UK) and two individual affiliates (in Norway and Switzerland). There are contacts with Germany and Sweden. Some of the WM patient organizations are very well organized and active, some are just starting.
For health reasons Joanna Van Reyn had to give up her membership of the board of EWMnetwork in the course of 2011. We are very grateful to her for all the work she has done, for her enthusiasm and her perseverance. Fortunately she still continues her activities for the WM patients in Belgium and as one of the moderators of the on line WM community ( for French language).
Board members in 2011: Lia van Ginneken, chair a.i., The Netherlands; Marlies Oom, secretary/ treasurer, The Netherlands; Veikko Hoikkala, Finland and Roger Brown, UK.

the board

f.l.t.r. Roger Brown, Lia van Ginneken, Marlies Oom, Veikko Hoikkala

Highlights 2011

Networking & Information:

Co-operation and partners:

As a member of ECPC (European Cancer Patient Coalition, www.ecpc-online.org ) and EURORDIS (European Organization for Rare Diseases, www.eurordis.org ), board members of EWMnetwork attended the general meetings and workshops of these organizations, had regular contacts with them and gave feedback on relevant issues.
Veikko Hoikkala had a meeting with the IWMF board about developing a closer partnership between EWMnetwork and IWMF and encouraging the development of more WM patient support groups in Europe. EWMnetwork and IWMF decided to sponsor jointly WMUK for organizing the 3rd European WM Forum, London, 11 March 2012 (www.wmuk.org.uk).
A new project, which brings closer partnership between IWMF and EWMnetwork in practice, is the WM online community, part of the international “Rare Disease Communities project”.
Eurordis, the American NORD (National Organization for Rare Disorders) and international patient organizations collaborate to develop these rare disease communities. Thanks to much help from Eurordis and Nord the WM on line community was launched in October 2011, offering translation in 5 languages ( Spanish, Italian, French, German, English) and thus enabling WM patients and their caregivers to share experiences and find more information. At the end of 2011 about 20 WM patients participate, including patients from Italy and Spain. Formerly there were no patient contacts with or between those countries. Many thanks deserve the moderators of the on line community Joanna Van Reyn and Phil Manning. http://www.rarediseasecommunities.org/en/community/waldenstrm-macroglobulinemia.

Marlies Oom had a meeting with the Belgium WM patient support group, which was founded by former board member Joanna Van Reyn and is growing fast.
In close co-operation with IWMF and EWMnetwork, Roger Brown took, on behalf of WMUK (contact point for WM patients in UK) the lead of the organization of the 3rd International Patient Forum on WM, to be held 11 March 2012 at the Royal Society of Medicine in London.
In view of the high travelling and hotel expenses, EWMnetwork did not attend the General Meeting of Lymphoma Coalition in San Diego, US in December 2011.

Advocacy:

The most effective way for EWMnetwork to influence EU health care policy issues related to WM proves to be, as in earlier years, through ECPC and EURODIS.
EWMnetwork was involved in ECPC’s advice concerning the new Reform of the European Clinical Trial Directive (which had become much too bureaucratic since the last Reform).
EWMnetwork was (via ECPC’s Rare Cancer Action Group) also involved in the preparation of a meeting with representatives of the European Commission. January 2011, ECPC met with Joanna Darmanin, Health Commissioner John Dalli’s Head of Cabinet, and Paula Duarte Gaspar, responsible for public health and risk assessment, to consider issues affecting rare cancer patients. The meeting raised the importance of increasing research funding for rare cancers, encouraging the establishment of centers of excellence, reference networks, registries, and promoting a dialogue between researchers, pharmaceutical industries, Health Technology Assessments (HTA) and patient advocacy groups in rare cancer policy.
Via Eurordis EWMnetwork was involved in a survey on off-label use of medicine.

Conferences, meetings attended:

Marlies Oom attended 12 January 2011, a meeting in Brussels where Forum Against Cancer Europe (FACE) launched its 2011 programme with a workshop bringing together Members of the European Parliament (MEPs), patient groups, and representatives from the pharmaceutical industry, the European Commission, researchers and the oncological community.
Lia van Ginneken and Marlies Oom attended the Eurordis Membership meeting held in Amsterdam 13-14 May.
Veikko Hoikkala attended the annual IWMF Ed Forum, this time held in Minneapolis 24-26 June.
Marlies Oom attended a meeting organized by EHA ( European Hematology Association) and ECPC with some MEP’s and European patient organizations in the field of hematology, held in Brussels 30-31 August.

Newsletters:

August 2011 a Newsletter was sent to the affiliates and contact persons of EWMnetwork.

Organization:

Board meetings:

In 2011 two board meetings were held, one 23 March in The Hague and another 18 July in London.

Affiliates:

In 2011 two new affiliates joined EWMnetwork, one representing a WM patient organization (Greece), the other as an individual affiliate (Norway), because there is no WM patient support group yet).

Medical Advisory Board (MAB):

In 2011 there have been some informal contacts between individual board members and individual members of the MAB. Dr. Oivanen, Finland, left the MAB, because he has taken up an administrative appointment.

WM Patient Organizations in Europe:

We have seen in 2011 a rise of membership in some WM patient organizations, like the one in Belgium. We hope that contacts with e.g. Spanish and Italian members at the WM online community will result in more WM patient organizations in these and other European countries. Finding volunteers to organize patient support groups however, remains a problem.

Finances and potential funding possibilities:

In 2011 the Dutch organization for Multiple Myeloma and Waldenström (CMWP) supported EWMnetwork financially again. The board of EWMnetwork is very grateful for this support. How long CMWP will be able to support EWMnetwork is uncertain. So it is necessary to find funding ( public or private sponsors).

Website:

In 2011 the interest in the website (www.ewmnetwork.eu and www.waldenstrom.eu) went up again compared with 2010. There were 1888 “unique visitors” (2010: 1150); 2884 “visits” (2010: 1650) and 13.740 “ hits” (2010: 10.323). The chapters “ Useful addresses”, “Treatment”, “ Board, affiliates”, “ News” and “ Partners” were in this order the best visited parts. Visitors came, as far as traceable, ( in order of frequency) from USA, The Netherlands, Germany, UK, France, Belgium, but also from USSR, China, India and South America.

ANNUAL REPORT 2010

European Waldenström Macroglobulinemia network in Brief

The Foundation “ Stichting EWMnetwork” (www.ewmnetwork.eu) has been active since 2009.
The mission is to enable WM ( Waldenström Macroglobulinemia) patients to represent their interests at a European level. This way WM patients are given a voice in policy and political issues of the European health care system.
EWMnetwork has contacts with WM patient organizations in Belgium, Denmark, Finland, France, Germany, Greece, Ireland, The Netherlands, Sweden, Switzerland and UK. Some of these organizations are very well organized and active, some are just starting.
Board members in 2010: Lia van Ginneken, chair a.i.,The Netherlands; Marlies Oom, secretary/ treasurer, The Netherlands; Joanna Van Reyn, Belgium; Veikko Hoikkala, Finland and Roger Brown, UK (since October).

Highlights 2010

Networking & Information:

Co-operation and partners:

As a member of ECPC (European Cancer Patient Coalition) and EURORDIS (European Organization for Rare Diseases), EWMnetwork visited the general meetings of these organizations, had regular contacts and gave feed back on relevant issues.
In 2010 EWMnetwork became a member of the Lymphoma Coalition, a global network of worldwide not for profit lymphoma patient organizations. In view of the high costs of the journey, EWMnetwork did not attend the General Meeting of this organization in Orlando, Florida in December 2010.
In the margin of the 2nd European WM Forum, EWMnetwork tried to work out with IWMF (International Waldenstrom Macroglobulinemia Foundation) how to enlarge the number of WM patient support groups in Europe.

Advocacy:

EWMnetwork supported, as participant of the “Rare Cancers Action Group” (initiated in 2010 by ECPC) the special attention that rare cancers need in Europe, in co-operation with the patient organization for rare diseases EURORDIS and ESMO/EAARC (European Society for Medical Oncology/ European Action Against Rare Cancer, www.rarecancers.eu).
The most effective way for EWMnetwork to influence EU health care policy issues related to WM, was, also in 2010, through ECPC and EURODIS.

Special mention here deserves FACE ( Forum Against Cancer in Europe, www.forumagainstcancer.eu ), launched by ECPC in 2010. Already 81 MEP’s (Members of European Parliament) are committed to follow one or more issues for the term of their legislature, for example on cancer research, cross-border healthcare, rare cancers, clinical trials, palliative care, young people and cancer, etc. Several informative workshops have been held with speakers of the Commission, the European Parliament, Research Organizations and patients.
Focus was on: inequality in the EU with respect to available medication and treatment, support for more (rare) cancer research, development of national (rare) cancer plans.

Conferences, meetings attended:

May, Krakau (Poland): 5th European Conference on Rare Diseases, organized by EURORDIS (European Organization for Rare Diseases). Important issues regarding rare diseases/ rare cancers were discussed such as: co-operation within and between countries, the forming of centers of expertise and European reference networks; the preparation of national plans for rare diseases within the European community due from 2012; the off label use of medicines for rare diseases and the problems that consequently arise with reimbursement.
October, Brussels, debate in the European Parliament on: “ Orphan Drugs for Rare Cancers, Proposals for Action at the European level” This event was organized by the Association of European Cancer Leagues (ECL), the Flemish League against Cancer (VLK) and the Foundation against Cancer, in collaboration with the European Society for Medical Oncology (ESMO).
October,Venice (Italy):

Board and affiliates of EWMnetwork were kindly invited by the organizers (BING Center for WM, Dana Farber Cancer Institute Boston, USA) to attend the last day of the 6th International Workshop on WM for European Physicians, preceding the 2nd European WM Forum (www.wmworkshop.org)
2nd European WM Forum, organized by IWMF (www.IWMF.com) . The Forum was an interesting opportunity for European patients with Waldenström’s Macroglobulinemia (WM) and their partners to meet both WM medical specialists from Europe and USA as well as fellow patients.

October, Brussels: ECPC Cancer Summit entitled “ Making the Cancer Partnership work”. This ECPC Summit brought together doctors, researchers, parliamentarians, patients’ organizations, EU Member States’ representatives and Commissioners.

Attending these conferences/ meetings appeared to be very useful again for networking and information.

Venice 1

2010 6th International workshop on WM,
Venice 2010

2nd European WM Patient Forum, IWMF, Venice

Newsletters:

In January, July and October 2010 we sent information to the EWMnetwork affiliates and contact persons. From July this type of information was distributed under the name “Newsletter”. Newsletters will be sent on relevant intervals in the future.

Organization:

Affiliates:

In 2010 three new affiliates joined EWMnetwork, either as an individual (Switzerland, because there is no WM patient support group yet) or representing a WM patient organization (Ireland, UK).

WM Patient Organizations in Europe:

Good news is to be mentioned about the growth in 2010 of patient organizations in Belgium, Finland, France, Ireland, UK and Germany. May many more countries follow! Finding volunteers to organize patient support groups however, remains a problem.

Medical Advisory Board (MAB):

In the first half of 2010 the following nine WM specialists from eight European countries joined EWMnetwork’s MAB.

Belgium, Dr. Jan Van Droogenbroeck, Haematological Center Hospital St. Jan, Brugge
Denmark, Dr. Lars Munksgaard, Dept. of Haematology, Odense
Finland, Dr. Petri Oivanen, formerly working for University of Tampere, now in medical industry
France, Dr. Pierre Morel, Hematology, Centre Hospitalier Dr. Schaffner, Lens
France, Dr. Veronique Leblond, Hematology, Hospital Pitié-Salpêtrière, Paris
Germany, Prof. Dr. med. Christian Buske, Institute of Experimental Cancer Research University of Ulm
Netherlands, Prof. Dr. Henk Lokhorst, Haemato-oncologist University Medical Center Utrecht
Sweden, Ass. Prof. Dr. Eva Kimby, Karolinska University Hospital , Stockholm
UK, Dr. Roger Owen, HMDS Laboratory, The Leeds Teaching Hospitals NHS Trust, Leeds

The board of EWMnetwork met with three members of the MAB, who participated actively in the 6th International Workshop on WM in Venice. Members of the MAB make WM patient organizations known to WM patients and other relevant stakeholders. In general the MAB provides counsel and support on relevant issues asked and unasked for. In 2010 there were no such issues.

Board meetings:

In 2010 two board meetings were held, one in January in The Hague and another in October in Venice.

Meeting with EWMnetwork affiliates:

A meeting with EWMnetwork affiliates was held in October in Venice, in the margin of the 2nd European WM Forum, organized by the IWMF. It was the first time that such a meeting was held and it was an inspiring experience. Representatives from eight European countries shared their information on how to organize WM patient support groups.

Venice 3
Meeting with EWMnetwork affiliates and partners, Venice 2010

Strategy plan:

The board adopted a new Strategy plan in October 2010.The main priorities are:

Recruiting additional board members and reallocate the tasks (autumn 2010)
Working out with IWMF how to enlarge the number of WM patient support groups in Europe (autumn 2010/2011)
Continuing and consolidating current networking and information activities (ongoing)
Looking for funding possibilities