Umbrella Organization of European Waldenström patient supportgroups and patients


Annual Report 2015

European Waldenstrom’s Macroglobulinemia network Annual Report 2015

1. Summary
Good news: July 2015 the European Commission (EC) granted marketing authorization in 28 European countries for IMBRUVICA® (ibrutinib) capsules as a treatment option for adult patients with Waldenström’s Macroglobulinemia (WM) who have received at least one prior therapy, or in first line treatment for patients unsuitable for chemo-immunotherapy.
However, each country decides for itself about the availability of Imbruvica for WM patients.
As far as we know now, in the EU at the moment Imbruvica is fully reimbursed in Germany and Denmark and by request for the individual patient in Greece and Norway.
Collaboration with European Hematology Association (EHA)
In September 2015 EWMnetwork was accepted as the 10th patient organization collaborating with EHA (for more information about (the role of) these patient organizations click:
For a number of years patient organizations have organized a Patient Advocacy Session at the EHA Annual Congress. In addition, EHA and patient organizations work together to advocate issues of common interest, such as personalized medicine or the regulations for clinical trials.
Plan of Action 2015-2016
In accordance with the Plan of Action 2015/2016 ( the activities of EWMnetwork in 2015 were focused on participating in relevant trainings, actions and congresses.
Together with other patient organizations EWMnetwork participated in actions coordinated by Eurordis like:
  • Proposals to develop more rare-disease therapies
  • MOCA Mechanism for Coordinated Access to Orphan Medicinal Products – Corporate Responsibility Pharmaceuticals
  • Recommendations on European Reference Networks for Rare Diseases (as platforms for collaboration, spreading clinical excellence, networking and research)
  • Call on EU National Competent Authorities for Pricing & Reimbursement to support:
    1. The establishment of a table for price negotiation with a group of Member States
2. The scaling-up of the pilots on early dialog between payers and developers of medicinal products

2. Organization

EWMnetwork Board
With effect from January 1 2015 Lia van Ginneken left the Board after seven years of inspiring work as Chair of EWMnetwork. Her vast network and her coordinating and binding qualities were a great
help in building up the EWMnetwork from 2008 onward. No new Chair has been appointed so far.
Two new Board members were appointed in March 2015, so the composition of the Board is currently:
United Kingdom, Roger Brown, member; Finland, Veikko Hoikkala, member; UK, Phil Manning, member; (new) The Netherlands, Melanie Meniar, member; The Netherlands, Marlies Oom, Secretary; (new) The Netherlands, Jan Trapman, Treasurer.
Contacts between Board members in 2015 took mainly place by email. A Board meeting was held on March 6th at Amsterdam-Schiphol Airport.
(New) Affiliates
In 2015 a WM patient group from Italy and Spain joined EWMnetwork as new affiliates. This brings the total of affiliated countries to 11 (Belgium, Denmark, Finland, France, Greece, Ireland, Italy, Spain, The Netherlands, United Kingdom and Switzerland). Sweden is trying to get a WM patient group started.
No affiliates meeting was held in 2015.
Medical Advisory Board (MAB)
In 2015 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; United Kingdom, Dr Roger Owen.
3. Advocacy & Networking 
The following activities were attended by a EWMnetwork Board member in 2015:
IWMF Ed Forum, Dallas: Veikko Hoikkala
Eurordis Summer School, Barcelona: Melanie Meniar
Lymphoma Coalition Europe (LCE) Members meeting, Vienna, combined with
European Hematological Association (EHA) Congress 2015 , Vienna: Marlies Oom
Eurordis-Council of European Federations, Paris: Roger Brown
More detailed information about the topics that were discussed at these meetings and the relevance for EWMnetwork can be found in the EWMnetwork Newsletter July 2015: )
Eurordis Round Table of Companies (ERTC) workshop, was held in September in Barcelona: Melanie Meniar. Theme: Patient relevant outcome measures (PROM)  & patient reported outcomes (PRO). These workshops are dedicated to bring different stakeholders together to discuss topics relevant to the development of orphan drugs and other treatment for rare diseases. The ERTC is gathering pharmaceutical companies with a common interest in rare diseases and orphan drug development.
Melanie Meniar also joined the Patient Advisory Council of the RARE Best Practices project. As part of this project, Eurordis is involved in writing the guidelines (pilot) for two rare diseases and has asked several patient organizations to become involved.
 European Consortium for Waldenström’s Macroglobulinemia (ECWM)
The ECWM is based on a clinical intergroup connecting all major clinical national study groups. Currently several clinical trials are in process which offer WM patients novel therapeutic approaches
in the setting of well controlled clinical trials.
ECWM has shown interest in contacts with patients and EWMnetwork is keen to play a role. A meeting in 2015 was not possible, but will probably take place in 2016.
Support needed
To play this advocacy role EWMn needs support and feedback from her present affiliated WM patient groups, but also from new ones. We are looking for a Chair and a Secretary. If you are interested or know someone who might be interested, please email .
4. Communication & Information
EWMnetwork Website
In 2015 the number of visitors to the website or increased very little. There were 5.722 unique visitors (2014: 5.415). In 2015 the number of visits was 9.683 (2014: 11.003 ). The effectiveness of the website is difficult to assess: there is little response or request for information.
EWMnetwork Newsletters
In an email Newsletter (July 2015) more detailed information was given about meetings, congresses etc. that had been attended by a Board member of EWMn. project for contact and meetings with WM patients
The 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. So far this has been the starting point for WM patient contact within only two countries (Italy and Spain). Maybe RareConnect can make this Waldenstrom-info project wider known and stimulate more response.
In Belgium, Finland, France, Germany, Ireland, The Netherlands and the UK at least once a year (or every other year) a meeting is held for WM patients and highly appreciated. We try to stimulate lymphoma patient organizations in other countries  to organize this kind of meetings for WM patients.
EWMnetwork Board member Phil Manning is very active as a moderator of the online WM-community This community is one of a growing number of other rare-disease patient communities (about 80 currently), that have their own online information and discussion with a facility for human translation into 5 European languages.
5. Finances
Financial Report 2015
The Financial Report 2015 will soon be available on the EWMnetwork website.
We owe many thanks to the Dutch patient organization Hematon for its yearly contribution to our work.

Rosmalen, January 12  2016

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