WHAT IS THE EUROPEAN WM NETWORK? WHAT IS THE EUROPEAN WM NETWORK? BY MARLIES OOM, EWMN SECRETARY-TREASURER by Marlies Oom, EWM n Secreta ry-Treasurer he EWMnetwork is a non-profit organisation established in 2009 with a board of European patients d caregivers to represent WM patients at the EU level. Membership is currently open to both pport groups The and EWMnetwork individuals is in a countries non-profit where organisation no support established group currently concern exists. to both EWMnetwork of us. Together has we must try to encourage the medical advisory in 2009 with board a board drawn of from European 8 countries patients and and is caregivers financed by development contributions of more from support countries groups within the European here patient to represent advocacy WM is funded patients nationally, at the EU principally level. Membership the Netherlands. Countries. Its operating Of the 29 European language Countries is (27 EU + Norway, nglish and is its currently motto is: open Patients to both for support Patients. groups More and details individuals can be found and Switzerland) at www.EWMnetwork.eu only 8 support or groups (UK, France, in countries where no support group currently exists. ww.waldenstrom.eu These websites act as contact points for other sources Germany, of Greece, WM information. Netherlands, We Belgium, Ireland, Finland) EWMnetwork has a medical advisory board drawn from 8 so publish a newsletter. operate in any formal sense. Countries such as Sweden have countries and is financed by contributions from countries internationally famous WM expertise but no support groups. e are an where umbrella patient group advocacy for patient is funded support nationally, groups throughout principally Europe Development promoting of support WM groups patient could be driven through terests at the a European Netherlands. level, Its operating where health language care is is English strongly and influenced its jointly by promoting European national legislation and and regional meetings and online deral EU motto bodies. is: We Patients have, for mainly Patients. in co-operation More details with can be other found rare at cancer through organizations, both our websites. contacts This with hopefully will boost IWMF U directors, www.EWMnetwork.eu commissioners and or members www.waldenstrom.eu. of the European These Parliament, membership, and with which other is low European in these countries. ganisations. websites We promote act as contact patient points interests for other with sources other of European WM organizations such as the EWMnetwork and IWMF board members meet informally uropean Cancer information. Patient We Coalition, also publish the a European newsletter. Organisation for Rare Diseases (EUORDIS) and the on many occasions. Board Member Veikko Hoikkala uropean Medicines Agency. We also attend meetings relating to associated diseases such as myeloma We are an umbrella group for patient support groups from Finland went as our representative to the Ed Forum d lymphoma to promote interest in WM, including distribution of our literature. throughout Europe promoting WM patient interests at a in Minneapolis to advance this partnership and was very nother strand European is the level, promotion where of health patient care trials is strongly for novel influenced medicines encouraged and increasing by the participation forward thinking of the IWMF Board and em, as well by European as trying legislation to give and patients federal a EU voice bodies. in the We have, clinical with trial Dr. protocols––making Guy Sherwood’s enthusiasm. trials We are now working derstandable mainly and in practical co-operation for with patients. other rare We cancer also promote organizations, the availability to turn some of of new the medicines suggestions and raised there into reality, such eatments and contacts get orphan with EU drug directors, status or commissioners treatment approval and members for WM patients as regular in all European features countries. in the Torch. of the European Parliament, and with other European e want to develop a closer partnership working with the IWMF Despite as limited our aims resources, are totally EWMnetwork is also working organisations. We promote patient interests with other mplimentary. For instance the lack of functioning support groups in to Europe try to is increase of concern the amount to both of information available in European organizations such as the European Cancer . Together we must try to encourage the development of more other support European groups languages. within EUORDIS the has invited us to Patient Coalition, the European Organisation for Rare uropean Countries. Of the 29 European Countries (27 EU + Norway, participate and in Switzerland) a multi-lingual only online 8 forum for WM (German, Diseases (EUORDIS) and the European Medicines Agency. pport groups (UK, France, Germany, Greece, Netherlands, Belgium, Spanish, Ireland, English, Finland) French, operate in Italian) any – see the example at We also attend meetings relating to associated diseases such rmal sense. Countries such as Sweden have internationally famous www.rarediseasecommunities.org. WM expertise but no support This European online as myeloma and lymphoma to promote interest in WM, oups. Development of support groups could be driven through WM jointly community promoting may national help promote and more support groups. including distribution of our literature. gional meetings and online through both our websites. This hopefully Finally, will boost we are IWMF committed membership, to promoting European WM hich is low Another in these strand countries. is the promotion of patient trials for novel patient meetings. Although the EWMnetwork has very medicines and increasing participation in them, as well as WMnetwork and IWMF board members meet informally on many limited occasions. resources, Board it has Member the ability to contribute to such trying to give patients a voice in the clinical trial protocols – eikko Hoikkala meetings and help with publicity, giving meetings a more making from trials Finland understandable went as our and representative practical for to patients. the Ed Forum Minneapolis to advance is partnership European or international ‘feel’ and encouraging participation We also and promote was very the encouraged availability by of the new forward medicines thinking and of the IWMF Board and with Dr uy Sherwood’s of European members from target countries. To this end treatments enthusiasm. and get orphan We are drug now status working or treatment to turn approval some of the suggestions raised there into ality, such we, together with the IWMF and WMUK, are financially for as WM regular patients European in all European features in countries. the Torch. supporting the Third <strong>International</strong> Patient Forum (following espite limited We want resources, to develop EWMnetwork a closer partnership is also working working to with try the to increase on those the held amount in Stockholm of information and Venice) on Sunday 11 March ailable in IWMF other as European our aims are languages. totally complementary. EUORDIS has For invited instance us 2012 to participate at the Royal in a School multi-lingual of Medicine in London. We hope line forum the lack for of WM functioning (German, support Spanish, groups English, in Europe French, is of this Italian)––see will be one of the the example largest WM at patient forums ever. ww.rarediseasecommunities.org This European online WM community may help promote more pport groups. 14 IWMF TORCH Volume 12.4
AN ED FORUM ALBUM: M<strong>IN</strong>NEAPOLIS 2011 Photos courtesy of Jack Whelan
Change language