Umbrella Organization of European Waldenström patient supportgroups and patients


Newsletter May 2013

- Introduction
- Impression EWMnetwork meeting 16 March 2013
- List of actions in follow up of the meeting
- Impression of the WMUK International Patient Forum 17 March 2013


In this Newsletter you can find information about the Waldenström events that took place in London on 16 and 17 March 2013. In follow up of the meeting the board of EWMnetwork listed possible actions and asked volunteers for these. We welcome more reactions, so please react if you are interested!
We hope this Newsletter gives you an idea of EWMnetwork’s latest activities together with partners.

EWM Network Meeting 16 March 2013: An Impression by Phil Manning

In a rainy and cold London on Saturday 16 March the Board of EWMN met with patients and caregivers from six European countries.

This was the network's annual affiliates' meeting, where we were also joined by the distinguished hematologist, Dr Robert Kyle, of the Mayo Clinic in the USA, who is on the Board of the IWMF as well as being Chair of its Scientific Advisory Committee. Dr Kyle was in town at the invitation of WMUK to address the 4th International Doctor/Patient Forum, which was to be held the following day.
Also present was Marta Campabadal, who works for EURORDIS in Barcelona and with her colleagues manages RareConnect, a pioneering website that supports those affected by rare diseases. 39 online communities, including WM, are currently supported by the provision for each community of an online discussion forum (accessible in five European languages), as well as areas for posting stories, personal profiles, articles and information. Marta gave a vivid and informative presentation of the RareConnect "user experience", including an overview of the multimedia elements available to the site's communities and highlighting the important issue of online privacy.

Mention had been made earlier in the meeting of EWMN’s own website, where there had recently been a notable recent increase in traffic. The resources offered by RareConnect were an encouragement to developing our own online presence and activities, for example to inform patients about the many organizations that made up the European framework for healthcare. It was also possible that EWMN could be more actively involved with RareConnect, one way being in finding moderators for the discussion forum whose languages were other than English.
The core of the meeting was a detailed exploration of the two main strands of EWMN's work—patient support and advocacy—with a view to setting priorities between them. However, rather than seeing these activities as distinct and maybe conflicting, it was agreed that they were complementary. Here, Dr Kyle's long experience in medical practice—and especially with the IWMF—was of particular value and he was emphatic that activities oriented toward patients, their carers and families were vital at all stages. Without a foundation of local involvement and meetings to build a strong base among patients, carers and professionals it would not be possible to deal with the challenges of advocacy, which would inevitably be more demanding of resources. The point was nevertheless powerfully made that successful advocacy would not be a mere matter of the size of our affiliated patient groups, but would rest on strength of organization and a willingness to be assertive, even loud, in the interests of sufferers.

EWmn meeting, listening to Prof. Dr. Kyle

With these principles in mind the Board would concentrate next on strengthening cooperation with those health agencies in Europe where it already had connections (Eurordis, ECPC, EMA) with a view to focusing its activities most effectively, key aims being the establishment of patient registries as well as the securing of clinical trials and new treatments within Europe. The latter would be especially pertinent given the added impetus now being given at official levels to the provision of health care across borders.

Lia van Ginneken, PP: some EU institutions relevant for WM. (PDF 211 kB) click here
Marta Campabadal, PP: RareConnect, and the WM on line community in 5 languages. (PDF 1.43 MB) click here

List of possible actions in follow up of the EWMnetwork meeting

After the meeting the board of EWMnetwork listed possible actions, like for instance:
  • - more input from members and sympathizers to the WM online community and EWMnetwork: e.g. share your news with members of the RareConnect WM online community ( and/or send your information about meetings of your WM contact group to the EWMnetwork website (
  • - co-ordination of information on topics that are relevant for advocacy in Europe, like access to new medicines, compassionate use of medicines, off-label use of medicines, access to clinical trials, EU patient registration, trans border research, cross border access to healthcare.
Depending on the availability of volunteers, the Board will prioritize the topics mentioned.
If anyone likes to get involved in one or more of these actions, please mail to Marlies Oom,

WMUK International Patient Forum 17 March 2013: An Impression and a report

The Forum was held at the Royal College of General Practitioners in London and was supported by IWMF, EWMnetwork and some (cancer) organizations in UK.
Keynote speaker was Dr Robert Kyle, renowed hematologist of the Mayo Clinic in the USA. Around 150 patients, carers, doctors and support organisations attended, and feedback was very positive.

Doctors panel at the WM UK Patient Forum

WMUK is currently editing the 2 Disc Forum DVD, to be available in May. At you can find how you can order the DVD by making a donation of £15 marking it as "Forum DVD" and WMUK will post when ready. At the WMUK website you can also find more pictures of the Forum on the "News and Events" page!

Here are the links to a Power Point (PP) presentation and 5 documents:
  • Phil Manning, Impression of the International Patient Forum click here
  • Phil Manning, Summery of the International Patient Forum click here
  • Dr. Monique Minnema, PP: Diagnoses and Treatment of WM in The Netherlands. (PDF 600 kB) click here
  • Dutch Guideline for Diagnosis and Treatment of WM. (PDF 167 kB) click here
  • Survey on diagnostic methods and treatment strategies used in patients with WM in The Netherlands (2013). (PDF 167 kB) click here
  • Questionnaire on Peripheral Neuropathy (Dr. Minnema e.a.) click here
    Questionnaire that you can fill in if you notice any unusual tingling, weakness or pain in your hands or feet.
    Early diagnosis and treatment offers the best chance for controlling your symptoms and preventing further damage to your peripheral nerves. It is advisable to fill in the questionnaire at the start of each treatment cyclus and discuss it with your doctor”.

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