Umbrella Organization of European Waldenström patient supportgroups and patients

European
WALDENSTRÖM'S
MACROGLOBULINEMIA
network

Annual report 2016

EWMnetwork Annual Report 2016

1. Summary

Three new Affiliates (Germany, Portugal and Scandinavia) joined the EWMnetwork in 2016.
A successful Affiliates meeting followed by a very informative Doctor-Patient Forum took place on October 8th respectively October 9th in Amsterdam .
In accordance with our Plan of Action 2015/2016 (http://www.ewmnetwork.eu/about/plan-of-action) the activities of EWMnetwork in 2016 remained focused on participating in relevant trainings, actions and congresses.
 
2. Organization

EWMnetwork Board
The composition of the Board was in 2016 as follows:
Marlies Oom, Secretary,The Netherlands; Jan Trapman, Treasurer, The Netherlands;
Members: Roger Brown, United Kingdom; Veikko Hoikkala, Finland; Phil Manning, United Kingdom;  Melanie Meniar, The Netherlands.
Contacts between Board members took mainly place by email.
A Board meeting was held on October 8th  2016 at Amsterdam.
 
EWMnetwork (New) Affiliates
In 2016  WM patient groups from Germany, Portugal and Scandinavia joined EWMnetwork as new affiliates. This brings the total of affiliated countries to 14 (Belgium, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Portugal, Spain, The Netherlands, Scandinavia, Switzerland and United Kingdom). The Scandinavian group consists of WM patients from Sweden, Norway and Denmark. Their first meeting was held in Copenhagen in 2016. They also have online contacts together.
An EWMn affiliates meeting was held on October 8th 2016.
 
EWMnetwork Medical Advisory Board (MAB)
In 2016 there were no changes in the composition of the MAB:
Belgium, Dr. Jan Van Droogenbroeck; Denmark, Dr. Lars Munksgaard; France, Dr. Pierre Morel;
France, Prof. 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 meetings or congresses were attended by a EWMnetwork Board member in 2016:
IWMF Ed Forum, Providence, USA: Veikko Hoikkala, Roger Brown
IWMF Doctor-Patient Forum, Amsterdam: Roger Brown, Veikko Hoikkala, Marlies Oom, Jan Trapman
Lymphoma Coalition Europe (LCE) Members meeting, Copenhagen, combined with
European Hematological Association (EHA) Congress 2016: 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 2016:
http://www.ewmnetwork.eu/news-events/newsletters/newsletter-juli-2016
 
EWMnetwork participated or followed closely the following advocacy items
  • In 2016 the first 23 European Reference Networks (ERNs) started. These are platforms for collaboration, spreading clinical excellence, networking and research, grouped by Therapeutic area. WM belongs to two ERNs: Rare Cancers and Rare Haematological Diseases. EWMnetwork participated in the democratic election of the 2 ERN’s where WM belongs to.
  • As member of Lymphoma Coalition (LC), EWMnetwork supported the action for “Subtyping of different Non Hodgkin Lymphoma”. LC believes it is better for patients and for patient contacts to report by subtype and not combine  the information under one heading such as Non Hodgkin Lymphoma (NHL).
  • As member of the Informal Workgroup of European Cancer Patients Networks (“WE CAN”) we followed the activities concerning “Joint Training and Capacity building” and about “Relationship with Pharma”.
  • Together with partner patient organizations and contacts via the European Haematology Association (EHA) and Eurordis , we supported “Proposals to develop more rare-disease therapies” and  “Affordable pricing of new treatments”.
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 in different countries are in process which offer to WM patients novel therapeutic approaches (and informal networks to doctors).
ECWM has shown interest in contacts with patients and EWMnetwork is keen to play a role. In 2016 there were some informal contacts, but no meeting yet.
 
Support needed
To play an 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, a Secretary and a Webmaster. If you are interested or know someone who might be interested, please email secretary@ewmnetwork.eu
 
4. Communication & Information
 
EWMnetwork Website
In 2016 the number of visitors to the website www.ewmnetwork.eu or www.waldenstrom.eu increased very little. There were 4.627 unique visitors (2015: 5.722). In 2016 the number of visits was 9.639 (2015: 9.683). The effectiveness of the website is difficult to assess: there is little response or request for information. On the other hand it can help people as guide to more specialized websites.
 
EWMnetwork online Newsletters July 2016 and December 2016
In the Newsletter July 2016 more detailed information can be found about meetings, congresses etc. that had been attended by a Board member of EWMn:
http://www.ewmnetwork.eu/news-events/newsletters/newsletter-juli-2016
In the Newsletter December 2016 a report of the Affiliates meeting and the Doctor-Patient Forum in Amsterdam, can be found:
http://www.ewmnetwork.eu/news-events/newsletters/newsletter-december-2016
 
Waldenstrom.info project for contact and meetings with WM patients
The www.waldenstrom.info project “a web-page for each European country” (30 different languages) enables contact between WM patients within their own country and in their own language and started at the end of 2013. In 2016 there were 2.472 unique visitors (2015: 3393) and the number of visits was 4.929 (2015: 5403).  So far this site has been the starting point for WM patient contact only within two countries (Italy and Spain). Maybe WM patients find each other via social media and do not need this website for contact. The website remains useful for the WM patient information per country given in one of the 30 languages.
In Belgium, Finland, France, Germany, Ireland, Italy, The Netherlands, Scandinavia 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 also this kind of meetings for WM patients.
 
RareConnect
EWMnetwork thanks again Board member Phil Manning, who is very active as a moderator of the online WM-community www.rareconnect.org.
This community is one of a growing number of other rare-disease patient communities (about 90 currently), that have their own online information and discussion with a facility for human translation into 6 European languages: German, English, Spanish, French, Portuguese and Italian.
 
5. Finances
 
Financial Report 2016
The Financial Report 2016 can be found on the EWMnetwork website.
We owe many thanks to the Dutch patient organization Hematon for its yearly contribution to our work.


Rosmalen, March 9th 2017

This is a website under permanent construction made by WM patients for WM patients.We will add new information in due time.
Disclaimer : By your use of the EWMnetwork for information and communication you relieve EWMnetwork of any responsibility
for the content of this website. Links to third-party sites appearing on this website are supplied for information only and EWMnetwork
cannot be held liable for the content or management of any such sites.