Umbrella Organization of European Waldenström patient supportgroups and patients

European
WALDENSTRÖM'S
MACROGLOBULINEMIA
network

Annual report 2012

1. Co-operation

2nd EWMnetwork Affiliates'Meeting, 10 March 2012 (www.ewmnetwork.eu)
24 representatives from 10 European countries, including a representative of the IWMF (International Waldenström Macroglobulinemia Foundation), attended EWMnetwork's Affiliates Meeting. A large part of the meeting was devoted to discussion of how to stimulate the foundation of WM patient support groups and give them acces to information in their own countries and languages.


2 nd EWMnetwork Affiliates’ Meeting, London, 10 March 2012

 
3rd International Patient Forum on WM, London, 11 March 2012 (www.wmuk.org.uk)
The Forum was a success, well organized by WMUK, many participants, good speakers, good logistics. The Forum was sponsored by several organizations, among them EWMnetwork and IWMF. About 225 people attended the Forum.


3rd International Patient Forum on WM, London, 11 March 2012

Follow up
Because of the success of these two events (see for more information the two above mentioned websites), the board of EWMnetwork decided, in its meeting on 8 August  2012, to support the WM Forum in London again in 2013 and to organize an affiliates’ meeting  on the day preceding the Patient Forum.  

Stimulating the foundation of WM Patient Support Groups
Via personal contacts board members paid in 2012 extra attention to stimulate WM patient support in Norway, Slovakia, Spain and Sweden. So far without results, but it takes time.
A complicating factor in stimulating the foundation of WM Patient Support Groups is the fact, that many countries have a Leukemia & Lymphoma Patient Organization, but that WM is not in the picture as a special group. Germany is a favorable  exception to this: “Leukemie Hilfe Rhein-Main”organized in 2012 the 3rd Biennial WM Patient meeting in Darmstadt. About 60 WM patients from all over Germany participated.

Stimulating participation of WM Patient Support Groups within EWMnetwork
The foundation of WM Patient Support Groups helps WM patients to have access to information and contacts with fellow patients in their own language. A next step is participation of WM Patient Support Groups within EWMnetwork and collaborate on advocacy at  European level. The fact that “English” is the  working language, seems to be a handicap for some patient organizations for joining the EWMnetwork. Germany seems to be an example of this. We hope that this can be solved by finding (an) English speaking person(s), who can represent the country within the EWMnetwork.

International Waldenstrom Macroglobulinemia Foundation IWMF (www.iwmf.com)
Meeting each other in London during the Forum in 2012 was another good stimulus for co-operation between IWMF and EWMnetwork. Both organizations pay much attention the each others’ activities. Nearly all affiliates of EWMnetwork are individually member of IWMF and this helps along communication.

RareConnect (www.rareconnect.org)
Thanks to moderator Phil Manning newcomers to the online “WM community” get a friendly welcome and interesting online discussions take place. The “WM online community” is one of 36 other communities of international patient organizations for Rare Diseases, which participate in the project “RareConnect”. Eurordis (European Organization for Rare Diseases, www.eurordis.org) and the American Nord (National Organization for Rare Disorders, www.rarediseases.org)  started this project.  Thanks also to the support of Robert Pleticha (Eurordis) and Alex Freitas (Nord) the WM online community has grown again in 2012.

Lymphoma Coalition (www.lymphomacoalition.org)
EWMnetwork is a member of this worldwide coalition of Lymphoma patients organizations. Our main contact is by email. We follow the discussions carefully in order to be able to get involved as soon as the topic is relevant for WM.

 2. Advocacy

Compared to other rare diseases, WM receives a lot of attention from the medical and scientific world, thanks to initiatives as the Bing Center (www.bingcenterforWM.org), with the international WM Clinical Trial group (www.wmctg.org) and the biennial WM workshop (www.wmworkshop.org).
This plays an important part with respect to advocacy activities. EWMn follows the developments closely and will support these activities from the patient perspective. For example: EWMnetwork is keen to play a role fit for a patient organization with regard to, for instance, clinical trials (e.g. patient friendly protocols).
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.

As for advocacy, EWMnetwork was represented at the following meetings, organized by ECPC (European Cancer Patient Coalition, www.ecpc-online.org) and/or Eurordis:

ECPC meeting on the RARECARE project, Brusels, 25 January 2012
The RARECARE project aims to build an information network to provide comprehensive information on rare cancers to the community at large (oncologists, general practitioners, researchers, health authorities, patients). The final objectives are to improve the timeliness and accuracy of diagnosis, to facilitate the access to high quality treatment for patients with rare cancers, to identify centres of expertise for rare cancers in Europe and to standardize practices across Member States.

ECPC/Eurordis Joint workshop on Rare Cancer Patients Registries, Brussels, 25 January 2012
Aim of the workshop was to create grass-roots momentum for the establishment of patient registries through the collaboration of all stakeholders and by speaking with one voice to call on the institutions to support this action. Doctors, researchers, parliamentarians, patients organizations, Member States' representatives and Commission officials participated in this well attended conference.

European Conference on Rare Diseases (RDs) & Orphan Products, Brussels, 23-25 May 2012, organized by Eurordis e.a.
Main topics were “early diagnosis”, “off-label” and “compassionate use” of medicines, “Orphan Drugs”, (again) patient registration of certain RDs (to be able to collect enough information for relevant statistical conclusions) and the importance of co-operation between RD patient organizations. The conference offered apart from a lot of new information also many opportunities for networking.

Workshop of (Eurordis) Council of European Rare Disease (RD) Federations (CEF), Paris, 30-31 October 2012
EWMnetwork is one of nearly 50 members of this Council. In this workshop, RD patient organization federations discussed new ways for sharing experience and learning from each other. Among other topics can be mentioned: Patients Rights in Cross Border Health Care, focusing on European Reference Networks for RDs; new possibilities of access to diagnostic and care in coming years; further potential of RareConnect for European RD Federations; European RD research projects and policy and development of Cancer Patient registries.
 

3. Public Relations

Newsletters
One Newsletter (March 2012) was sent this year. The EWMnetwork website seemed a better medium for new information and for links to longer articles than a newsletter. New items on the website that deserve wider attention will be announced by email to the affiliates/ contact persons.

Website
In 2012 the interest for the website (www.ewmnetwork.eu and www.waldenstrom.eu) increased again compared to that in 2011. There were 3200 unique visitors" (2011:1888); 4927 "visits" (2011:2884) and 30.541 "hits" (2011:13.740). The chapters "Treatment", "Useful addresses", "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, UK, Germany, France, Luxembourg, but also from USSR, Ukraine, Canada.

4. Organization

Board (meeting)
In 2012 the composition of the board is not changed: Lia van Ginneken, chair a.i.; Marlies Oom, secretary/treasurer; Roger Brown and Veikko Hoikkala, board members.
The board had one meeting: 8 August 2012 in The Hague.


EWMnetwork board meeting, The Hague, 8 August 2012
Fltr Lia van Ginneken, Roger Brown, Marlies Oom, Veikko Hoikkala

Affiliates (meeting)
In 2012 the number of affiliates stayed the same as the previous year. Most of the WM patient groups that are affiliated to EWMnetwork report a slow increase of the numbers of their members, but otherwise no real changes compared to 2012. An impression of the Affiliates’ Meeting can be found at www.ewmnetwork.eu, click Newsletter March 2012.

Medical Advisery Board (MAB)
Dr. Monique Minnema succeeded Dr. Lokhorst as member of the MAB. Both are attached to UMCU (University Medical Center Utrecht, The Netherlands). There was no reason for official consultation of the MAB in 2012. Support and advise was given through informal contacts with EWMnetwork board members.

Finances and funding
In 2012 the Dutch organization for MM&WM (CMWP) supported EWMnetwork again. It remains necessary to find funding from new sponsors.

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