Umbrella Organization of European Waldenström patient supportgroups and patients

European
WALDENSTRÖM'S
MACROGLOBULINEMIA
network

Annual Report 2014

Annual Report 2014 EWMnetwork
  1. EWMnetwork in Europe
Compared to other rare diseases, Waldenström’s Macroglobulinemia (WM) receives a lot of attention from the medical and scientific world, as was demonstrated again at the biennial WM workshop (IWWM-8,www.wmworkshop.org), this year  held in London, August 2014.
The start in 2013 of the European Consortium for Waldenström’s Macroglobulinemia, (ECWM, www.ecwm.eu) is another initiative from the medical world, that gives special attention to WM.
The ECWM is based on a clinical intergroup connecting all major clinical national study groups. Currently several clinical trials are initiated which offer patients with WM novel therapeutic approaches in the setting of well controlled clinical trials.
At the EWMnetwork Affiliates meeting in London, August 2014, ECWM showed interest in contacts with patients and EWMnetwork is keen to play a role fit for a patient organization with regard to, for instance, clinical trials (e.g. patient friendly protocols). EWMnetwork follows the developments closely and will support these activities from the patient perspective.
In addition, EWMnetwork focuses on issues which are relevant for all rare diseases on a European level, e.g. authorization of medicines in the various European countries.
To play this advocacy role EWMn needs support and feedback from her present affiliated  WM patient groups, but also from new ones. EWMnetwork stimulates since 5 years, together with IWMF, the start of WM patient support groups in more countries, resulting so far in only one and maybe two new WM patient groups in Europe.
 
  1. The Organisation
 
Affiliates
In 2014 the Swiss Lymphoma Organization Ho-NoHo joined EWMnetwork as new affiliate. This brings the total of affiliated  countries to 9 (Belgium, Denmark, Finland, France, Greece, Ireland, The Netherlands, UK and Switzerland). Sweden and Italy joined both EWMnetwork as individual affiliate. Sweden is preparing the start of a WM patient group and Italy has just started one. Including the individual affiliate of Norway this brings the total on 3 individual affiliates.
 
Medical Advisory Board (MAB)
In 2014 there were no changes in the composition of the MAB:
Belgium, Dr. Jan Van Droogenbroeck; Denmark, Dr. Lars Munksgaard; France, Dr. Pierre Morel;
France, Dr. Veronique Leblond; Germany, Prof.  Dr. med. Christian Buske;
Netherlands, Dr. Monique Minnema; Sweden,  Prof. Dr. Eva Kimby; UK, Dr. Roger Owen
 
EWMnetwork Board
In 2014 the composition of the board remained unchanged:
Netherlands,Lia van Ginneken, a.i.  chair; Netherlands, Marlies Oom, secretary/ treasurer;
Finland, Veikko Hoikkala, member; UK, Roger Brown, member; UK, Phil Manning, member.
 
Board Activities
Contacts between the board members in 2014 took place by email. The board members met once  in London on the eve of the Affiliates-MAB (Medical Advisory Board) meeting and the IWMF Doctor-Patient Forum August 16-17 (see 4).
EWMnetwork had regular contacts with EURORDIS (patient surveys, congress Berlin), IWMF (exchange of information, Patient-Doctors Day in London) , Affiliates (information, meeting in London), Lymphoma Coalition Worldwide (meeting in Milan) and Lymphoma Patient Organizations in Europe (exchange of information).
 
In 2014 the following topics were specially discussed:
  • relationship EWMnetwork and IWMF
In written contacts and in life meetings the different aims and roles of each organization were explained and the complementary roles in Europe recognized and practised.
  • ambitions of EWMnetwork
Because the present board members have limited time as volunteers, the board  decided for the time being for “a low key EWMnetwork, focussing on promoting online WM patient info and support in more European countries and concentrating on WM Clinical trials, access to (new) medicines (in relation to EURORDIS and ECWM (European Consortium for WM) and other relevant partners)”.
 
  1. Activities
 
Affiliates (-MAB) meeting
The first part of the affiliates meeting was a combined meeting with members of EWMn’s MAB (Medical Advisory Board). This part of the meeting was attended by 5 members of the MAB from 5 different countries and  7 affiliates/ representatives from 5 different countries.
The aim of this part of the meeting was to establish closer contacts between European doctors and patient representatives, in order to explore opportunities for co-operation with respect to our communal aims towards the treatment of WM. Speakers were Dr. Leblond and Dr Buske, who (re)presented the European Consortium of WM (ECWM) and would discuss within ECWM: modification of the ECWM website for patients, a brainstorm session between doctors and patients (early 2015), annual meeting with a patient slot (participation).
The second part of the affiliates meeting focused on exchanging new ideas, how to get new WM patient groups started in more European countries. This part of the meeting was attended by 19 persons (affiliates, contact persons, partners) from 9 different countries. The main theme of discussion was how to stimulate WM patient support in the various European countries. Many countries in Europe do not (yet) have a WM patient group at all. Two countries, UK and France, have a WM patient organization of its own. In other  countries (e.g. Denmark, Germany, Netherlands, Sweden, Switzerland) WM patient support groups are  part of a lymphoma patient organization or are combined in a patient organization with Multiple Myeloma (Belgium) or are facilitated by a national cancer organization (Finland).
 
The reactions on this new form of  a combined Affiliates(-MAB) meeting were very positive.
Thanks to a grant from Janssen Pharmaceutica NV, EWMnetwork could offer to the EWMn affiliates reimbursement for attending the EWMnetwork’s affiliates(-MAB) meeting and the IWMF Doctor-Patient Forum on 16-17 August in London.
 
IWMF Doctor-Patient Forum
Also thanks to this grant from Janssen Pharmaceutica NV, EWMn could financially support the Doctor-Patient Forum that was held following the IWWM-8 (8th  International WM Workshop for medical specialists and researchers) in London. About 220 participants from 13 countries (including circa 25 EWMn related participants, as board members, affiliates, contact persons with their partners) attended the Doctor-Patient Forum, that was very well organized by WMUK and IWMF.
  1. Advocacy & Networking  
Ewmnetwork was represented at the following conference, meetings and congress.
 
Eurordis Conference
The Biennial ECRD (European Conference on Rare Diseases) took place in Berlin on May 8-10. Around 800 stakeholders (academics, healthcare professionals, industry, patients’ representatives, payers, regulators and policy makers) met and discussed relevant themes and actual problems, like unity in Healthcare Technology Assessments, Research and Access to orphan drugs (off label use etc.). The fact that in many cases, each European country is entitled to make his own decisions in healthcare matters, does complicate the finding of effective solutions.
For the representative of EWMn it was a good opportunity to update knowledge and contacts.
 
Lymphoma Coalition Worldwide meeting
Lymphoma Organization Worldwide organized and sponsored a meeting in Milan on June 12 with Lymphoma Patient Organizations in Europe. Patients and doctors discussed among other things the collaboration in practice of patient organizations and health care professionals and the possibility of a plan to advocate together on the base of best practice and data collecting were discussed.
For the representative of EWMnetwork it was a good opportunity to meet representatives of Lymphoma Patient Organizations from various European countries and talk about support for WM patients in their country.
 
EHA meeting
At the EHA Congress (European Hematology Association) in Milan, Patient Advocacy Meetings had been organized on June 13-14. About 35 patient organizations participated. Topics were: access to effective drugs and the position of generics in hematology; psycho-social care, the design of and access to clinical trials. The EHA congress was a good opportunity to intensify the contacts that had been made the previous day at the Lymphoma Coalition Europe Meeting and to talk with different   patient organizations from various European countries about support for WM patients in their country.
 
  1. Communication & Information
 
EWMetwork Website
In 2014 the number of visitors of the website www.ewmnetwork.eu or www.waldenstrom.eu increased again with 1.858 more visitors than in 2013. There were 5.415 unique visitors (2013: 3.557) and 11.003 visits (2013: 6.356). Apart from the increase of visitors, the effect of the website is difficult to trace. There is little response or request for information.
 
EWMnetwork Newsletters
In two email Newsletters (June and September) more detailed information was given about EWMnetwork meetings, congresses etc. that had been attended or organized by EWMn.  
 
EWMnetwork Flyers
New informative flyers have been made in 2014.
 
Waldenstrom.info project
The www.waldenstrom.info project “a web-page for each European country” enables contact between WM patients within their own country and in their own language and started at the end of 2013. Only two countries reacted so far. Maybe the article in IWMF’s Torch Magazine (November 2014) and RareConnect will make this project wider known and stimulate more response.
 
RareConnect
A member of the EWMnetwork board is very active as moderator of this online WM-community www.rareconnect.org. The WM online community is one of a growing number of other RD patient communities (70 now), that have their own online information and discussion, on request translated into 5 European languages.
 
  1. Finances
See the Financial Report 2014 that appears after approval of the board together with this Annual report on the EWMnetwork website.
Many thanks we owe to the Dutch Patient Organization Hematon for her yearly contribution and to Janssen Pharmaceutica NV for her donation in 2014.
 
Rosmalen, January 11 2015

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