Umbrella Organization of European Waldenström patient supportgroups and patients

European
WALDENSTRÖM'S
MACROGLOBULINEMIA
network

Newsletter March 2012 (selection)

LOOKING BACK ON THE LONDON FORUM 11 MARCH 2012
Looking back on the 3rd International Forum on Waldenström's Macroglobulinemia we congratulate the organizers with this well organized and interesting event. Around 220 people from the UK, Ireland and the mainland of Europe attended the Forum, which  was held on Sunday 11 March in the Royal Society of Medicine, to hear expert presentations on developments in the understanding and treatment of WM.


The doctors’ panel with from left to right:
Pierre Morel, Pierre Wijermans, Shirley D’Sa , Steve Treon,
Eva Kimby, Chara Kyriakou, Rebecca Auer, Roger Owen


Perhaps the most exciting of these is the recent discovery by Dr Steve Treon's team at The Bing Center for Waldenström's Macroglobulinemia (http://www.bingcenterforwm.org/) in Boston Massachusetts of a genetic abnormality present in one DNA molecule of 90% of patients tested. This finding-summarised by Dr Treon in person at the London Forum and whose further implications are now being keenly explored by the Bing Center team-offers the possibility of precisely targeted treatments (http://www.bingcenterforwm.org/bing-center-spotlight/376-wm-genomeproject).

Topics as ‘Nerve problems and WM’ and ‘Treatment of WM in the UK’ were presented by prominent UK physicians (Michael Lunn, Roger Owen, Shirley D’Sa, Chara Kyriakou, Rebecca Auer). In addition Eva Kimby from Sweden talked about ‘Understanding WM: The symptoms of WM and Why they occur’, Pierre Morel (France) about ‘Rituximab and WM’ and Pierre Wijermans (Netherlands) about ‘The Dutch approach of the treatment of WM’.
On www.WMUK.org.uk click “downloads” you will find  around April the Power Point presentations of the different speakers. Also around April a photo gallery and a video of the Forum, will be available on this site.

LOOKING BACK ON EWMnetwork’s  AFFILIATES’ MEETING 10 MARCH 2012
The day preceding the International Forum on WM, EWMnetwork organized a meeting with affiliates from Belgium, Finland, Greece, Ireland,The Netherlands and UK and guests from Germany, Norway, Sweden and USA.
We were very happy that in this meeting  EWMnetwork and IWMF could  discuss , among other issues, how to stimulate the formation of WM patient contact groups in the various European countries in more detail.
As there was so much information and experience to exchange between the different countries and groups, it was only a pity that we did not have more time for informal contacts before and after the meeting. We should organize more time for that next time!
Phil Manning attended the meeting  as moderator of the WM on line community (www.rareconnect.org, click Waldenström's Macroglobulinemia) and wrote the following impressions.

“Impressions of EWMnetwork Affiliates’ Meeting – London 10 March 2012
No fewer than 10 countries were represented at the meeting of EWMnetwork affiliates that took place at The Royal Society of Medicine in advance of the 3rd International Patient Forum, organized by WMUK, that was due to take place the following day. The meeting also benefited from the presence of Dr Guy Sherwood, a Trustee of IWMF and fruitful discussion of a number of issues of crucial importance to WM patients and carers was facilitated by the able chairmanship of Lia van Ginneken, President.


EWMnetwork’s Affiliates’ meeting,
London 10 March 2012


Although EWMnetwork is an umbrella organization whose membership is mainly made up of WM patient support groups, individuals can join if their country does not have such a group. The value of such a membership policy was underlined by the fact that several attending the meeting came from countries without dedicated WM support organizations who were thus able to describe personally to the meeting the precise challenges they face in making contact with fellow patients or in obtaining access to current information on WM and its treatment. Such personal insights gave added impetus to EWMnetwork’s desire to see more patient groups established and a large part of the meeting was devoted to discussion of how to stimulate the foundation of groups and give them access to information in their own languages.

Those attending were given a clear understanding of how EWMnetwork fits into a wider network of umbrella organizations within Europe in order to lobby more effectively for those affected by WM. At the same time the meeting recognized the gap between needs and resources in the case of a disease that is at once rare and at the same time predominantly affects older people. Against this background it was particularly valuable that the meeting recognized the crucial role played by the IWMF in disseminating the most accurate and authoritative information and in funding research. One challenge that lies ahead is to develop organizations and structures that fit the European context, with its variety of languages and cultures, while at the same time playing the fullest possible part in the worldwide battle against a puzzling and uncommon disease.”

  
SOME USEFUL ADDRESSES
Some of the attendants at the affiliates’ meeting  asked for information from the Bing Center  for Waldenström's Macroglobulinemia, www.bingcenterforwm.org.
If you like to receive Bing Center's Newsletter, just send an email to Chris Patterson,  Administrative Director Dana Farber Cancer Institute, Harvard Medical School, Bing Center for Waldenström's Macroglobulinemia , Boston. Mail to Christopher_Patterson@DFCI.HARVARD.EDU.

Other websites that deserve mentioning here are the European Organization for Rare Diseases www.eurordis.org and the European Cancer Patient Coalition www.ecpc-online.org .
More useful addresses and links you also can find on www.ewmnetwork.eu.

This is a website under permanent construction made by WM patients for WM patients.We will add new information in due time.
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