Back from DDW in New Orleans, besides the huge networking developed by our Chair, Secretary, Treasurer and CEO, another important step towards a worldwide impact of IBD patients' perspective and voice was made.
A meeting with USA, Canada, Australia and Brazil IBD organisations took place about the first IBD World Day (May 19th as a core date but an entire week in terms of local events).
World IBD Day is the first, but important, attempt to gather worldwide IBD organisations with the purpose of giving higher visibility and raising awareness on IBD issues.
EFCCA has then started to developed links with Members of the EU Parliament in order to publicised the World IBD Day and a statement has been circulated in the past weeks.
At the moment EFCCA is collecting the first positive reactions among the MEPs, important contacts with the EU Parliament Health, Environment and Consumers' Committee are under development and we are pleased to announce that World IBD day has been presented in the Regions for Economic Change Conference by our CEO during a workshop on Health and Local policies.
If you have a contact and you wish to involve a Member of the European Parliament in the
campaign, please contact the CEO.
Luisa Avedano
EFCCA CEO
EFFCA breaking news nr. 3/2010
Sunday, 02 May 2010
EFCCA GENERAL ASSEMBLY AND 20TH ANNIVERSARY
EFCCA Bus
Two weeks ago EFCCA General Assembly took place in Helsinki.
Despite of the ahs could which caused the closure of the many European airport the majority of
delegates could reach the wonderful Capital city of Finland.
Nearly three days of had work characterised our staying. A very productive atmosphere which saw the
proactive participation of EFCCA members: a commonly shared decision making process which led to
boost EFCCA new deal whose pillars of transparency, ethics, commitment and involvement showed
their value and inner strength.
The EFCCA General Assembly 2010 (GA) is taking place
in Helsinki, Finland, 15-18 April.
Newsletter 31 - October 2009
Wednesday, 18 November 2009
Issue 31 of the EFCCA Newsletter is now available to download October 2009
ADAPT – Adacolumn® paediatric trial
Tuesday, 01 September 2009
What is Adacolumn®?
Adacolumn® is an apheresis system, i.e. a system to clear blood from
substances, molecules or cells. It removes activated leukocytes from
the blood without significant loss of other cells or fluids. Cells
removed can no longer maintain inflammation processes present in
ulcerative colitis.
Adacolumn® is approved (CE certified) and since about 10 years in use
for the treatment of inflammatory bowel diseases (ulcerative colitis
and Crohn’s disease). In adults Adacolumn® has already been shown to be
safe and efficacious.
The ADAPT trial
The ADAPT trial investigates if these efficacy and safety results
can also be confirmed in a paediatric patient collective. The trial is
currently ongoing in Denmark, Germany, Italy, Finland, Sweden, and the
UK. Main inclusion criteria are
Age below 18 and a body weight above 30 kg
Ulcerative colitis (left-sided or pancolitis), moderately active with a PUCAI between 35 and 64
Pre-treatment with 5-asa or derivatives, mercaptopurines and or
steroids; if treatment is ongoing, doses must have been stable for
defined times
Pre-treatment with immuno-modulators and/or biologics is an exclusion criterion.
The trial has a basic duration of 3 months for a patient, and a follow-up extension over 1 year for responders.
For more information, please contact Dr. Marita Franz at Otsuka’s Research Institute in Frankfurt, Germany (
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)
Newsletter 30 - May 2009
Thursday, 11 June 2009
Issue 30 of the EFCCA Newsletter is now available to download.
What's New 
SPECIAL ISSUE on THE WORLD IBD DAY
The EFCCA General Assembly 2010 (GA) is taking place
in Helsinki, Finland, 15-18 April.
Issue 31 of the EFCCA Newsletter is now available to download