Umbrella Organization of European Waldenström patient supportgroups and patients


Newsletter December 2016

Go back to newsInserted on Thursday 29 December 2016

NEWSLETTER, December 2016
This Newsletter contains a lot of information about and links to presentations and pictures of the EWMnetwork Affiliates’Meeting, the IWWM-9 (including YIA winner Lisa Kaiser) and the Doctor- Patient Forum that all took place in Amsterdam between October 6-9 2016.
You ‘ll also find information about the start of 23 European Reference Networks and a short report of the first patients meeting of WM Scandinavia. At the end of this Newsletter you will find a call for a new Ewmnetwork secretary and webmaster.

1.EWMnetwork Affiliates’ Meeting, Amsterdam, 8 October 2016:
An Impression by Phil  Manning (UK), Board member EWMn
In the two years since EWMN last held an Affiliates’ Meeting (London, 2014) there have been numerous advances in the understanding of the disease mechanisms of Waldenström’s macroglobulinaemia and consequently in the exploration and development of new treatments. The mood among the physicians and researchers meeting at the Ninth International Workshop on WM in Amsterdam this year was one of increased optimism and the EWMn meeting that took place alongside this main conference was also marked by a very positive spirit.
Eight different countries were represented at the meeting, which was most ably facilitated by Prof. Dr Peter Huijgens, and this was the first time that we were joined by representatives of the patient-support organisations newly established in Italy, Spain and Sweden. Belgium, Finland, France, the Netherlands and the UK were also represented. Also present were Carl Harrington and Elena Malunis, respectively President and Vice-President for Member Services of the IWMF, as well as Hans Scheurer of Hematon, the Dutch blood cancer support organisation that is the core funder of EWMn. Mention should also be made of Janssen, the pharmaceutical company, who made a generous grant in support of the meeting.
33 patients are currently connected with WM Skandinavien, formed out of Sweden this year, which grew out of local networking and currently operates via a closed group on Facebook. There is great potential for further connections to be made, as there are reckoned to be anything up to 1000 WM patients in Scandinavia. There is a need for good quality written information in the Scandinavian languages, although the fact that the IWMF’s website operates with a Google Translate facility is of value.
The Italian support organisation was founded in 2015 and is based in Milan. It currently holds one educational meeting a year, publishes a magazine three times a year and hosts an
online forum. Benefiting from a grant from pharma towards technical translation, the organisation is currently connected with 90 people, including 18 doctors and two
researchers. Italian translations of some IWMF publications are available for online download.
The Spanish organisation is currently more informal, but there are two doctors already active and involved.
A lively discussion followed, in which various issues were touched on:
  • The need for good quality technical translation is recognised by the IWMF, but some funding of technical translations has been possible in addition to the provision of volunteer translation of various factsheets.
  • Involving doctors in online discussion is recognised as desirable but is difficult to achieve.
  • There is a need for information about clinical trials to be made more easily available.
  • While the acquisition of knowledge was proceeding at notable speed, the increasing awareness of subtypes, even of a rare disease like WM, was presenting a challenge to the recruitment of sufficient numbers for clinical trials.
  • Once the European Medicines Agency, acting on trial information, licensed a treatment for use, it was up to the individual nations to conduct their own ‘health technology assessments’ (HTAs) before making treatments available through their respective health services. Some countries shared HTA procedures and sometimes patients were involved in these, but mechanisms could differ between countries and there is reason to believe that the system is better suited to the assessment of one-off interventions (for example, proton-beam therapy) rather than for chronically managed conditions such as WM.
The meeting closed with a clear and renewed sense that EWMn should continue to develop a role in facilitating the sharing of knowledge, contacts and information among the European nations, as well as continuing its work of patient advocacy across the continent of Europe. Over the coming months the Board will be considering how best to support and sustain the growing network in the midst of the rapid changes now evident in the WM landscape.

2. IWWM9 International Doctor-Patient Forum, Amsterdam, 9 October 2016
2a From the following information.
The IWWM9- International Doctor-Patient Forum was sponsored by the IWMF and Hematon (the Dutch blood cancer organization), and was held in Amsterdam, The Netherlands, on October 9, 2016. Over 170 people attended the educational forum from 20 countries including all of the countries in Western Europe, Australia, Canada, the Dominican Republic, Poland and the US.
Attendees got to hear the latest news about exciting research advances directly from some
of the top investigators and clinicians in the field.
The videos from the Doctor-Patient Forum can be viewed here.
The presentations, in English, can be downloaded and viewed by clicking on

IWWM9 International Doctor-Patient Forum, Amsterdam, 9 October 2016
2b An Impression by Chris and Lilli Robinson (UK), visitors (source
“The 9th International Doctor Patient Forum was held in Amsterdam on Oct 9th 2016.
We had previously attended a similar meeting held in Venice, also riddled by canals, but doesn’t have the whizzing cyclists. Entering the Renaissance Hotel, the conference room was a real surprise as from the hotel you descended into a tunnel to re-emerge into a church (the Koepelkerk). This provided a grand setting – a high circular building with galleries and a massive church organ still in place.
It was a full day starting at 9.30 and finishing with a Q and A session around 6 with eleven speakers, 5 American, 4 Dutch, 2 Spanish covering a wide range of aspects of WM. These varied over the latest thinking on existing treatments, new treatments, research into the fundamental causes and dietary isssues. Only about 20 to 30 of the 200-odd audience were British but all presentations were in English. How lucky we are.
I have to say as a non-medical person understanding the haematology behind the WM condition is daunting. Also, there are a range of possible symptoms, and various treatment options to which patients may react differently.  The message to patients is to try to make sure your treatment is tailored to suit you. But through the day what came across is the determination and energy of the medics and researchers to get on top of this condition. We learnt that fantastic progress is being made in treatment regimes and in the drive to find a cure.
The day was free to patients and carers courtesy of the Dutch organisers Hematon and the American Federation the IWMF and a sumptuous lunch was thrown in as well.
Perhaps Dr Kersten got the biggest laugh of the day when she put up a slide and said ‘ here is a simplified diagram…’ We dread to think what the unsimplified one looked like!
And the biggest cheer should go to the speakers who gave up their Sunday to talk to us.
Lots of photos at  IWWMW9 Patients
3 Inside IWWM9 2016 – Lisa Marie Kaiser, who received for her work one of the “Young Investigators Awards” (YIA) wrote the following:
 “I am honored and blessed to share my experience from the IWWM9 conference in Amsterdam with you —a conference in which great physicians and researchers came together to share their knowledge in order to fight against Waldenström’s macroglobulinemia (WM). For me, it was an overwhelming experience having had this opportunity to present my project at IWWM9, not just because it was my first international talk, but also having been able to experience the great interest in my research and having had the possibility to meet other young scientists and physicians who work passionately on Waldenström.
Receiving the Young Investigator Award made this conference very special to me. It is an enormous motivation to know that people suffering from WM have awarded me, and stand by in supporting my work. In turn it helps me to follow my ideas and go to the lab every day with a big smile. I love my work, and I will do my best to make my contribution to help the Waldenström community to move forward and stand together for a cure.

Lisa's YIA was sponsored by EWMnetwork.
Lisa Kaiser: ''my project focuses on naturally occurring peptides which target CXCR4"
Because of the work of scientists in the U.S., we know the importance of the genetic status of MYD88 and CXCR4 in treating patients. In view of its central role, we started to screen a peptide library derived from human hemofiltrate to find a new inhibitor of CXCR4. By sub fractionating more than 330 fractions, containing more than 1 million peptides, we could identify an as yet unknown antagonist of CXCR4 called EPI-X4 (endogenous peptide inhibitor of CXCR4). In our first experiments, we confirmed that EPI-X4 is acting as a typical CXCR4 inhibitor. We see that it is highly specific, able to block CXCL12 mediated cellular migration, mobilizes hematopoietic stem cells and inhibits inflammatory responses in vivo. I see a great potential in this peptide as it gets generated from albumin, the most abundant protein in our body under acidic conditions, which are a hallmark for inflammation. Furthermore, our preliminary data show that EPI-X4 impairs clonogenic growth in vitro and migration towards a CXCL12 gradient of Waldenström cells at least as effective as AMD3100. In the future, we would like to understand the effect of EPI-X4 on homing signaling and lymphoma propagation in vivo, and we ask the question: does EPI-X4 act as biomarker in Waldenström´s macroglobulinemia?
To move forward, to answer our questions and to understand the role of naturally occurring peptides targeting CXCR4 in WM, we get support from the IWMF and its Research Roadmap.
I would like to take the chance and say thank you to all the WM patients around the world. Without you, our research wouldn´t be possible. I would also like to thank my mentor, Christian Buske, whose scientific advice is of immeasurable value for me, as well as the
support of Jan Münch and Daniel Sauter from the Virology Department at the University of Ulm”.

4 First WM Scandinavian meeting (Susanne Oehrn reports)
“On December 15, the first WM Scandinavian meeting was held in Stockholm.There was in total 40 participants’ who met together to share a day of lectures, experiences and to make
new friends. The day started with a second breakfast while we familiarized ourselves with each other, which contributed to the positive and open atmosphere during the day.
The program began with a welcome speech from Susanne Öhrn, WM Scandinavia group leader, Christian Pedersen, Swedish Blood Cancer Association and Tone Hansen, chairman of the Norwegian Blood Cancer Association.
This was followed by an individual presentation where we introduce ourselves and our personal situations in brief. Some had long experience of WM and several different treatments, others had just begun their WM journey. It was really a good start of the day and an ice breaker to make good contact with each other. During the day we had reserved time where patients and caregivers could exchange experiences with each other, which was very appreciated.
Professor Eva Kimby hold a very interesting lecture about WM in general and about different treatments, medications, and some updates on new research. Eva's lecture was so exciting and interesting that we had to take a break for lunch and continue afterwards. On this second session Eva also answered questions. Unfortunately, Doctor Lena Brandefors was sick so it was Eva herself who had to answer all the questions.
Chairman of the Norwegian Blood Cancer Association Tone Hansen gave a very vivid and inspiring presentation focusing on the psychological aspects of living with WM and what we can do to make ourselves feel a little better. How to work with our mindset and our communication.
The day ended with summarizing of the meeting. What was good, and what we could be improved to the next meeting. The group were over all extremely positive and happy about the WM-day. Suggestions where made that the next meeting should be staged in spring or autumn. Wishes where expressed for more lecturers (but not in English), and more time for questions and perhaps even personal consultation.
Many thanks to all who helped and made this day possible: IWMF, Swedish and Norwegian Blood Cancer Associations, Lyle (Danish lymphoma and leukaemia Association), ABF Stockholm and Janssen Pharmaceutical Co.”

5 First 23 European Reference Networks for Rare Diseases - A milestone for 30 million patients in Europe
 The European Commission announced the first 23 European Reference Networks for rare diseases (ERNs). This momentous step comes after years of collaboration and efforts between rare disease patients, clinical experts, and policy makers in EU Member States, at the European Commission and the European Parliament to bring the ERNs to fruition. Read the full press release.

6 EWMnetwork is looking for volunteers who are interested in participating in WM advocacy activities at the European level.
EWMnetwork’s patient advocacy proves  effective if carried out in co-operation with other relevant European patient- and (blood-)cancer organisations. Contacts with EWMnetwork Affiliates and with representatives of relevant national and European patient organisations  take place mainly via email, webcalls and webmeetings and via face-to-face meetings at conferences and other assemblies.

The legal term of the present Secretary (a Board position) ends (after two terms of 4 years) in June 2017.
We are looking for a volunteer Secretary with the following qualifications:
  • You are a WM patient or a relative of a WM patient
  • You are interested in advocacy for rare diseases such as WM
  • You have some experience in working with digital media (for instance as secretary)
  • You speak and write English well
  • You can spend an average of 4 hours a week on work for EWMn (with peaks now and then) in this function
We are also looking for a volunteer Webmaster with the following qualifications:
  • You have experience with websites and possibly also social media
  • You speak and write English well
  • You can spend an average of 1 hour a week (with peaks now and then) in this function.
    If you are interested  (or know someone who might be interested) in one of these functions (or in the combination of them), please contact the present Secretary, Marlies Oom, at

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