Umbrella Organization of European Waldenström patient supportgroups and patients

European
WALDENSTRÖM'S
MACROGLOBULINEMIA
network

Newsletter November 2013

  • 8th International WM Workshop – London, 13-17 August 2014:
    • EWMn Affiliates meeting – tentative date Saturday 16 August 2014
    • IWMF/WMUK Patient Day – Sunday 17 August 2014
  • EURORDIS Summer School - Barcelona, 2-6 June 2014
 
Introduction
The main purpose of this November Newsletter is to announce the launch of a new website www.waldenstrom.info , which is linked to the redesigned EWMN website. The aim of www.waldenstrom.info is to promote contact between European WM patients in their own countries and languages.
In this Newsletter we also share some recent news and look ahead to other WM events, especially those in London in August 2014.
 
www.waldenstrom.info
For each country in Europe a new website page is now available at www.waldenstrom.info. These pages can also be reached via the www.ewmnetwork.eu site. At the top right and bottom right corners of each page on these websites you will find pop-up menus  listing the countries – just click on the flag/name of the country you are interested in and you will be taken directly to the page containing the WM-related information relevant to that country.
The aim is that eventually each country will have a named contact person to take care of their country’s page. Once this contact person has been identified in your country they will be able to keep in touch with anybody who sends an email or provides a telephone number.
The contact person will also receive a login code from the webmaster of www.waldenstrom.info, to enable simple messages or information (e.g. for a possible WM patient contact meeting in your country etc.) to be posted on their country’s page. Think of country pages as notice boards to enable information to be shared and contacts to be made within each country, leading, we hope, to the setting up of patient support and advocacy groups across Europe.
 
EWMN board meeting – 21-22 August 2013, The Hague
New board member
We are very pleased to inform you that Phil Manning has joined our Board. Phil lives in London, is very active as moderator of the WM online community www.rareconnect.org and also as a member of the WMUK patient organisation.
Focus points for EWMnetwork
Building the sustainability of EWMnetwork remains first priority for the board. This implies such priorities as: finding more moderators for RareConnect, more volunteers for input on RareConnect and the EWMn website, more (inter)action from and between the affiliates, more efforts for funding.
Next to this, “online patient oriented activities” and advocacy  (especially fast access to ibrutinib, establishing a patient registry / access to clinical trials) remain priorities for lobbying. 

From left to right:  Phil Manning, Veikko Hoikkala,
Marlies Oom, Lia van Ginneken, Roger Brown
 
Evaluation Affiliates meeting – London, March 2013 and List of Actions
The meeting was well attended and participants were positive about the outcome (see also Newsletter May 2013).
Some points of attention for the next meeting are: more time for contact and socializing between the affiliates; the agenda should not be too complex; a choice of cheaper hotel accommodation for patients/attendants. Only few ambitions on the list could be realized because of lack of volunteers!
 
8th International WM Workshop  – London, 13-17 August 2014
The International Workshop takes place every 2 years and is one of the highlights of the professional WM research calendar. It offers a platform for exchange of knowledge on all aspects of research and treatment of WM. Since 2008 a Patient Day has been organised at the end of the Workshop and so on this occasion a Patient Day is planned for Sunday August 17 2014.
 
The next EWMnetwork affiliates meeting  will also take place during the Workshop. The date (to be confirmed) is Saturday August 16 2014.
 
More details of programs, time and place will follow as soon as possible, but please mark these dates in your diary.
 
EURORDIS Summer School – 2-6 June 2014
The EURORDIS Summer School offers a very good programme for those interested in playing a role in advocacy on behalf of patient organizations. Participants in the past have always been very positive. More details can be found in the two attachments to this Newsletter. In completing the application form to attend you can refer to EWMnetwork as a member of EURORDIS.

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.