EFCCA Magazine 2/2015

 

The second issue of the EFCCA Magazine 2015 is now available online.

It includes interesting information about our activities at EFCCA as well as inspiring stories and information on IBD from around the world. We would like to highlight our article concerning World IBD Day that is being celebrated this month on 19 May. Furthermore, our EFCCA Youth Group has also made a challenging contribution on the subject of exploring alternatives to preganancy when you have IBD: the open and frank interviews will give you a better understanding of what these 2 women had to go through. 

Finally, there is also a scientific article about a new drug that has so far shown promising results and which has become the talk of the IBD community. 

 

 

Enjoy the reading and many thanks to those who have contributed to it!!!!
 

Download Magazine 2/2015

EFCCA AGM 2015

This year the EFCCA General Assembly will take place in Brussels from 29th to 30th May 2015. It will be our 25 th  anniversaryand a good moment to reflect on our mission and work accomplished. On the second day we are organising a Symposium on Patient Safety which is open to the public. An agenda of this meeting will be made available shortly. 

 

More information about the GA can be found on the Members Only Section of our website at: http://members.efcca.org/

 

On 31 st May, a day after the GA, EFCCA will also participate at the Brussels half marathon as part of our World IBD Day activities. A dedicated team of around 40 runners will be running under the purple colours of the EFCCA team in order to raise awareness about Crohn´s disease and Ulcerative Colitis. More info 

 

 

World IBD Day 2015

This year more than 40 countries across the globe are joining together in a unified effort to raise awareness about Crohn’s disease and ulcerative colitis in honor of  World IBD Day, held every year on May 19. This year’s efforts center around a global video campaign encouraging anyone impacted by IBD to share their story in a short video with the unifying theme of  “United We Stand.”  Worldwide, five million people live with Crohn’s disease and ulcerative colitis.  
 

Watch the YouTube playlist

 
 
 
How to get involved!
 
The campaign calls for anyone affected by Crohn’s disease and ulcerative colitis--patients, caregivers, gastroenterologists, nurses, family and friends to submit a YouTube video sharing their story.   
 
Videos should not be longer than 20 seconds. It should include your name, your city and country, two sentences about how IBD has impacted your life and end with the message “United We Stand in the Fight Against IBD. For social media, use #UnitedWeStand2015. Videos will be made public on 19 May 2015 and can be viewed on the World IBD Day website (www.worldibdday.org).
 
For more information and campaign instructions please visite www.worldibdday.org
 
Show the world how IBD has impacted your life! Join others in their daily fight against IBD. 
 
 

Run with us to raise IBD awareness

As part of the World IBD Day celebrations EFCCA is organising participation at the Brussels 20 km marathon in order to raise awareness about Crohn´s Disease and Ulcerative Colitis, collectively known as inflammatory bowel disease (IBD), which affect over 3 million people in Europe.

 

The 20 km marathon will take place on 31 May at 10 am in Brussels, Belgium. Starting point is at the Parc du Cinquantenaire.  

 

So far we have over 40 runners registered from 13 European countries including a mix of professional and amateur runners made up by patients, doctors, friends and family members. 

 

EFCCA will also be presented with an information booth at the starting point of the race. The booth will be run by a team of volunteers and supporters wearing the purple t-shirts of the EFCCA team and colour of World IBD Day. We are going to distribute purple ribbons and materials to inform people about IBD and about EFCCA activities.

 

EFCCA would like to thank the 20Km Brussels marathon staff for their support and assistance.

 

Come and join us too!!!

 

If you are interested to join our purple team please write to This email address is being protected from spambots. You need JavaScript enabled to view it.

For more information please write to : This email address is being protected from spambots. You need JavaScript enabled to view it.

 

If you are unable to participate in the race but would like to sponsor participation of an international runner we are also making available vouchers for companies and stakeholders. 

 

Download voucher

Biosimilars and Biologics

BAB - Biologics Biosimilars Survey

The European Federation of Crohn´s and Colitis Associations (EFCCA) invites you to participate in this important survey on Biosimilars.

 

The purpose of the survey is to assess patients´ knowledge about biosimilars and to find out to what extent patients are aware of the issues involved around biosimilars medicines. The results of the survey will allow us to elaborate a common EFCCA position to effectively advocate for better patients rights with the medicine licensing authorities and relevant governments institutions.

 

The questionnaire consists of 14 questions and will require approximately 10 minutes to complete. 

 

The questionnaire is available in [English], [French], [German], [Italian] and [Spanish].

 

For Bulgarian, Greek and Serbian please follow this link and chose your relevant language. 

 

This questionnaire has been designed in collaboration with Prof. Laurent Peyrin-Biroulet and his team - dept of Hepato-Gastroenterology CHU in Nancy.

Translations, technical tools and dissemination material are under unrestricted grant from Abbvie.

Survey on IBD patients' perception of Surgery

How surgery is perceived by people with Inflammatory Bowel Disease?
 
An international online survey promoted by the European Federation Of Crohn’s And Ulcerative Colitis Associations (EFCCA) with the Scientific Support of and international team of experts led by Professor Antonino Spinelli, M.D., Ph.D. and Professor Francesco Pagnini, Psy.D., Ph.D.
 
As many of you may remember, this important project was presented at the EFCCA General Assembly in 2013. The aim of this study is then to investigate the subjective perception of the surgery, together with its relationship with the quality of life in people with IBD. EFCCA is aware that this topic is a very important one and the survey can be a further step forward to better understand what people with IBD believe and would like to achieve in terms of a higher quality of life.
 
This online survey may lead to better explore expectations and fears of people with IBD in the hope of offering a clear picture to specialists, and to have a stronger voice about our future and our choices.
 
As previously mentioned, this is an international online survey whose participation is open to all our people enrolled in one of the national members. The only inclusion criteria will be the diagnosis of IBD. People with IBD who have already attended surgery, as well as those who may (or may not) attend it in the future, are allowed to join the study. Items from the questionnaire deal with the personal experience of surgery including perceptions, opinions, fears, and prejudices.
 
The entire survey will require 15-20 minutes to be completed. Currently, the survey is only available in English; however, translations into other languages are on the way. If you do not feel comfortable with English, please feel free to send an email to: This email address is being protected from spambots. You need JavaScript enabled to view it. mentioning your preferred language among French, German, Spanish, or Italian, and you’ll be contacted when the translation is available.
 
Study participation is completely voluntary. Participants may choose to withdraw at any time and are free to skip any questions that they do not want to answer. There are no risks associated with participating in this study. Identifiable information will not be stored and data will be used for scientific publication only as aggregate. 
 
Deadline will be fixed once all translations will be made available. Thanks in advance for your participation!
 
United we stand
 
Marco Greco – EFCCA Chairman on behalf of the EFCCA Board of Directors
 

Pact for Patient Safety

 

New fraternity launched for safer healthcare everywhere
 
Brussels, October 15, 2014: The Irish Patients Association today launched the Pact for Patient Safety at the European Parliament with the participation of the European Commission, the European Centre for Disease Prevention and Control and the European Ombudsman.
 
Supported by more than 20 patient associations throughout Europe, and representing hundreds of thousands of patients, the Pact for Patient Safety establishes 10 key commitments for health authorities such as involving patients in patient safety programmes, publicising data on parameters of patient safety, providing full access to patient records, incentivising safety with healthcare managers and raising awareness at national level on indicators of patient safety. Patients and citizens everywhere now have the opportunity to individually sign the Pact and demand greater safety of care through its dedicated 
website. 
 
Member of the European Parliament Séan Kelly (EPP, Ireland) remarked that, “the Pact is a resource for patients and citizens 
throughout Europe and beyond to generate awareness of safety in healthcare institutions, as well as to support patients and 
patient representatives to drive accountability with policymakers on the 10 commitments of the Pact.” 
 
Stephen MacMahon, Director of the Irish Patients Association, and leader of the initiative, announced, “Given that 1 in 10 
patients are currently harmed while receiving care, it is time that patients’ demand for safer care is heard and they can do that by signing the Pact for Patient Safety. The Pact creates an opportunity for greater accountability, access, and patient safety in 
healthcare systems.”
 
The Pact for Patient Safety marks the beginning of a new movement by patients, and for patients, to facilitate commitment 
from health authorities and policymakers, healthcare professionals and healthcare providers, towards better protecting 
patients from unnecessary harm. 
 
For more information and to sign the Pact, please visit the website at: www.pact4safety.com.
 
For further inquiries:
Stephen MacMahon
Irish Patients Association
+353 876 594 183 
This email address is being protected from spambots. You need JavaScript enabled to view it.

EFCCA article published in Journal of Crohn´s and Colitis

 

Results of the EFCCA led IMPACT survey have been published in the latest issue of the Journal Crohn´s and Colitis. In the article entitled "IBD and health-related quality of life- Discovering the true impact" some of the main findings from the IMPACT survey have been highlighted.  The results of this survey can be used in defining strategic priorities and planning projects and awareness raising activities. The unmet needs of IBD patients can be better demonstrated and communicated to the public, health service managers and politicians.

 

The Journal of Crohn's and Colitis is the official journal of the European Crohn's and Colitis Organisation (ECCO), and is concerned with the dissemination of knowledge on clinical, basic science and innovative methods related to inflammatory bowel diseases. The journal publishes original articles, review papers, editorials, leading articles, view points, case reports, innovative methods and letters to the editor. 

 

The above mentioned article was written by Sanna Lönnfors in collaboration with Severine Vermeire, Marco Greco, Daan Hommes, Chayim Bell and Luisa Avedano.

 

Read more about IMPACT