E F CC A M AG A Z I N E
European Federation of Crohn’s and Ulcerative Colitis Associations | May 2014
Tennis player
Belgian
Chocolate fan
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Crohn’s patient
Sister
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Teacher
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EFCCA Members
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Contents
$+,)-./0,1/2')-,32-,4/05,
EFCCA News
5
A#4-()#C':A==>'D#.#)43'>!!#5236++++++++++++++++...............................................................5
European Youth Group
12
EF,'4.1'"4)#.-8**1++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++GH
Member News
18
>'3%/#'-%5#'$*55%-5#.-'-*'!#)<#'"#*"3#'@%-8'EF,++++++++++++++++++++++++++++++++++++++++++++++++++++GI
Living with IBD
32
,%4)6'*/ '4.'E)*.54.+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++JH
News from partners
36
Medical Review corner
38
A focus on Biosimilar medicines...................................................................................38
Every effort has been made to ensure that the information in this publication is presented accurately. The contents are provided for general information and should not be relied upon for any
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for errors or for any other consequences arising from the use of information contained herein.
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impact on our lives. They do not only affect our health but they
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in social activities or establish friendships and more intimate
relationships.
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understanding of the physical and socio-economic burdens of the disease and to accelerate the dissemination
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are starting to bear the fruits of our labours.
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EFCCA Contact details:
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Registration:
1096/97
revised 22/2/2006
No. 459814543
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milestone in our efforts to gain more visibility and to create more noise amongst
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their organisations and activities and both transmitted
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and get a clear mandate from members on the future
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proposed budget.
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GA delegates taking a break
Elections to the board
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had been nominated as candidates for the elections.
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and economic burden of chronic disease in the
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pharmaceutical companies and other health related
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effectively and to develop recommendations.
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Luisa Avedano
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resources should be made available by the means of
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New EFCCA Executive
Board (from left back row):
Martin Kojinkov, Betty
Vandevelede, Marco Greco,
Arne Schatten, Chayim Bell,
Bruno Raffa. Front row:
Andrea Broggi (EFCCA
staff), Ciara Drohan, Salvo
Leone, Luisa Avedano (CEO).
6
The discussion revolved then around the need to
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an important approach that integrates this vision and
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international and national strategies to control the
burden of chronic diseases.
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“I’d like to point out that there is a big set
of chronic diseases whose causes/cures are
unknown and where prevention is not possible
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affecting about 3 million of European
citizens and that is dramatically growing
among youngsters and children, in particular.
IBD have a huge impact in terms of the
quality of life, of discrimination against
in the labour market and education and
I urge the European Commission to take
also these chronic diseases into consideration,
including them in its strategy and in the
research programmes recently launched under
Horizon2020.”
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not heard about biosimilars before.
Does my doctor know enough about the drug (biologics vs.
biosimilars) and enough about my history? ¨
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biologics?
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Is the potentially lower price worth the possible risks of the
misleading.
biosimilar?
In fact this may lead to false attribution of adverse
event if reporters only refer to the Non-Proprietary
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those surveyed thought that the same INN meant the
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These very interesting interventions from participants
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10
PA/030/2014/CH3a
^#'2#3%#<#'-84-'%-'%!'-8#')%?8-'5*5#.-'-*'34(.$8'*()'
It seemed thus clear that the use of distinguishable *@.' _:A==>H' !()<#6' *.' 2%*!%5%34)!' 45*.?' *()'
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to further strengthen and facilitate patient safety 4.1'!84)#1'(.1#)!-4.1%.?'*/ '-8%!'2().%.?'-*"%$'@8%3!-''
84<%.?'4-'-8#'-*"'*/ '*()'<%!%*.'"4-%#.-!['!4/#-6'4.1'/(33'
through effective pharmacovigilance.
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11
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$+,03)2A1)6,0;0<d)9.2)=A31)DE)<A1/+2).HAP)
By Daniel Sundstein (Denmark), leader of the EFCCA Youth Group
Áslaug Eva Björnsdóttir (Iceland), member of the EFCCA YOuth Group
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society in general. As a natural result of the great
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and parenthood.
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to hospital. One parent in hospital and one parent
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the feeling of not being there. The thoughts about
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same time.
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All these thoughts are thoughts from young people -84-'@#'1%1.[-'R.*@'@#'@*(31'84<#'4.1'a(#!-%*.!'-84-'
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12
Allan, can you tell us what your main concerns
were when you decided to have a child?
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even an issue.
Can you tell us what your most challenging
moments as a dad have been and how you
managed to cope with them?
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What would you say to people who are in a similar
situation?
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@*))6%.?'42*(-'-8#'@84-'%/!x'*)'@84-'%-'%!'?*%.?'-*'2#'
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for having a child such as being in a stable relationship
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13
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What have been the reactions from your family
and friends?
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!8*(31'.*-'4//#$-'6*()'3%/#'%.'4'241'@460'-8#'$*.-)4)6'%improves and enhances your life.
Are you thinking of having another child?
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Have you thought of how you will explain to
him about your disease?
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“The joy you get out of a child
is much greater than any worries
you might have or the stress
about not knowing what is going
to happen
”
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.1I)9A3T2).2).)4.3,3)KA3)4+0;I3,1)90/+)2-,40.;)1,,I2P
Hanne, what went through your head when you
thought about having a child?
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medicines. I told my health care professionals that I
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get better as soon as possible. They advised me to
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a long time.
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Were you worried about being physically up for
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...you never know how your
4.1' #<#)6-8%.?' @#.-' &.#+'
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B*'/4)'56'8#43-8'$*.1%-%*.' body will respond to getting
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84!' 2##.' ?**10' #<#.' 56' pregnant but it is fantastic to
of the child than perhaps
boyfriend mentioned that
have
and
raise
a
child.
(...)
For
*-8#)' 1411%#!' 1*+' ^#' 43!*'
he nearly forgot that I had
have a lot of family and
the disease because I have me it was really positive being
friends around us. They all
been in such good shape pregnant, I guess I was really
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in the last year and a half.
lucky!
they tell me all the time
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grateful for that.
What have been your most challenging moments
What would you say to people who are in a similar
and how do you cope with them?
I guess the most challenging moment is that I simply situation like you?
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are ready for it you should do it. Personally I feel
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Will you have another child?
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happen.
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sporting events and activities full of fun and laughter.
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Once you have been selected you should prepare
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your national association youth activities or activities
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colleague to present the poster during the presentation.
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The national association should cover the costs for
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Our mission is to help
patients live a better life
Shire’s mission
Shire is one of the world’s leading specialty
biopharmaceutical companies - but, more importantly,
we make a difference to people with life-altering
conditions, enabling them to lead better lives.
Shire’s vision is to continue to identify, develop and
supply life-changing products that support physicians
in transforming the lives of patients with specialist
conditions. Fostering innovation and delivering value not
only promises a better understanding of diseases but
also provides the best hope of treating and eventually
eliminating them.
History and growth
Since its foundation in 1986, Shire’s endeavour to
provide innovative treatments for unmet medical needs,
coupled with investment in research and development
(R&D), has resulted in considerable growth and
diversification.
Shire’s focus on improving outcomes for patients
with GI diseases
Gastrointestinal diseases affect millions of people,
reducing quality of life for both patients and their
families. These diseases also add to overall healthcare
costs. New medicines will help reduce that burden.
- Shire understands the unmet needs of patients with
GI diseases and endeavours to provide innovative
treatments to the specialist physician for the benefit
of the patient.
- Shire aims to be at the forefront of the development
and provision of treatments for GI diseases including
ulcerative colitis and chronic constipation.
- Shire is determined to build and maintain
relationships with patient advocacy groups, both
through providing research funding and education,
as well as encouraging a regulatory environment that
supports innovation and value.
- Shire is committed to providing new treatment
options and working in partnership with physicians
that make a real difference in the lives of patients
with GI diseases.
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© Shire International GmbH, 2014
INTSP/IN/MEZ/14/0035 Date Of Preparation: April 2014
To be as brave as the people we help.
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Leon, although Spain is your adopted country
you are originally from Holland, what is the story
behind this?
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second patient diagnosed at that time.
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local association but soon enough people from other
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a national association made up of local groups. I
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How did you get involved with founding the
Spanish association for IBD patients?
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be treated and I started a special consulting hour for
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the patient.
18
How did you get involved into
representing patients at the
European level?
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at their tenth anniversary about
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Being a doctor and patient at the
same time I really had perfect
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several other national associations
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Leon Pecasse in his adopted home city Malaga, Spain
19
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good start.
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in improving the doctor-patient relationship not only
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got is from the association and not from the doctor.
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have gotten a lot better.
Do you think life has improved for people with
IBD over the years and to what extent have patient
associations contributed towards this goal?
You have decided to retire. It´s remarkable that
you have been committed to the cause for IBD
people for so long.
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treatment options are better and the time of diagnosis
has been reduced even though in some cases it still
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chronic disease and the mental aspects of having a
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30
OUR NAME HAS
CHANGED.
OUR COMMITMENT TO
GASTROENTEROLOGY
ENDURES.
The partner you once called Abbott
is now AbbVie. Our name has changed
but our commitment to join you in
improving patient care does not. We
stand by our promise to develop and
deliver innovative medicines and work
with you to elevate the standard of
care in the treatment of inflammatory
bowel diseases.
abbvie.com
©2013 AbbVie.
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nurse education throughout Europe.
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