SURVIVORSHIP IN CANCER - International Waldenstrom's ...

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 International 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