Umbrella Organization of European Waldenström patient supportgroups and patients

European
WALDENSTRÖM'S
MACROGLOBULINEMIA
network

annual report 2017

EWMnetwork Annual Report 2017
 
  1. Summary
A change in the Board took place: 2 of the Board members stopped and 3 new members joined the EWMnetwork in 2017. Sadly two board members passed away in 2017.
A  Board meeting was held at April 23, 2017 at Schiphol Airport.
Good news: also in the UK, Ibrutinib is since October available for relapsed WM patients
No new affiliates joined in 2017.
In accordance with our Plan of Action 2015/2016 (http://www.ewmnetwork.eu/about/plan-of-action) the activities of EWMnetwork in 2017 remained focused on participating in relevant trainings, actions and congresses.
 
 
  1. Organization
    1. EWMnetwork Board
The composition of the Board was from May2017 as follows:
Roger Brown, Chair, UK; Tine van der Schaaf, Secretary and webmaster,The Netherlands (replaced Marlies Oom, who had to stop after 2 times 4 year in the Board); Jan Trapman, Treasurer, The Netherlands;
Members: Phil Manning, United Kingdom (passed away in October);Melanie Meniar, The Netherlands; Susanne Öhrn, Scandinavia; Tjaarda Weber, The Netherlands (passed away in September). Veikko Hoikala, Finland stopped also because of 2 times 4 years in the Board.
Contacts between Board members took mainly place by email.
A Board meeting was held on April 23, 2017 at Schiphol Amsterdam. Minutes can be found in the website.
Phil Manning was already for a long time in the board of EWMnetwork (August 2013). He did, besides work for EWMnetwork a lot of work as moderator for RareConnect and also as an affiliate for WMUK.
Tjaarda Weber was just shortly in the Board. He joined the Board very enthusiastic and wanted to visit some congresses to give WM more attention.
 
 
  1. EWMnetwork (New) Affiliates
In 2017 no new WM patient groups joined EWMnetwork as affiliate. This means that the total of affiliated countries is still 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.
In Scandinavia a facebook group is set up for WM patients with a lot of success. WM Scandinavia has held also “mini” meetings (due to long distances) and a very successful meeting for Scandinavia in Stockholm was held.
An EWMn affiliates meeting was held on April 23, 2017 at Schiphol Amsterdam. Unfortunately only 1 affiliate joined the board. This learned the board that it is optimal to combine an affiliate meeting with an interesting WM congress in Europe.
 
 
 
 
  1. EWMnetwork Medical Advisory Board (MAB)
In 2017 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.
 
  1. Advocacy & Networking
    1. The following meetings or congresses were attended by a EWMnetwork Board member in 2017:
IWMF Ed Forum, Phoenix, USA: Roger Brown
 
 
  1. 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.
  • As member of Lymphoma Coalition (LC), EWMnetwork still supports the action for “Subtyping of different Non Hodgkin Lymphoma”.
  • As member of the Informal Workgroup of European Cancer Patients Networks (“WE CAN”) we follow  activities.
  • News from IWMF, EHA, LC, Eupati, Eurordis, ECPC and some other organizations is closely followed and shared.
 
 
  1. 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 new Board members. If you are interested or know someone who might be interested, please email secretary@ewmnetwork.eu
 
 
  1. Communication & Information
    1. EWMnetwork Website
In 2017 the website is updated and made more accessible (thanks to Paul Theuns, webmaster, and  Marlies Oom). More links are included in the website and the website was made easier to find.
The number of visitors to the website www.ewmnetwork.eu or www.waldenstrom.eu increased. There were 6843 unique visitors (2016: 4.627). In 2017 the total number of visits was 10.866 (2015: 9.639).
The effectiveness of the website is difficult to assess: there is little response or request for information. Only about 15% of the visitors looks longer than 30 sec in the website. On the other hand it can help people as guide to more specialized websites.
 
 
 
 
  1. Waldenstrom.info project for contact and meetings with WM patients
The www.waldenstrom.info 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.
Nowadays WM patients can find each other probably easier than before via social media.
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 countriesto organize also this kind of meetings for WM patients.
 
 
  1. RareConnect
www.rareconnect.org.
This community is one of a growing number of other rare-disease patient communities (about 130 currently), that have their own online information and discussion with a facility for translation into at least 6 European languages: German, English, Spanish, French, Portuguese and Italian.
 
 
  1. Finances
    1. Financial Report 2017
The Financial Report 2017 will soon be available on the EWMnetwork website.
Many thanks we owe to Janssen Pharmaceutica NV for her donation in 2017.
 
 
 
Mijdrecht, March 6, 2018
 
 

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