Get involved in World IBD Day 2015

Global awareness raising campaign
 
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.  
 
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

 

World IBD Day is coming up soon and EFCCA is now busy organising our 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 (at the Parc du Cinquantenaire ) and we hope to have a huge team of supporters running under the purple colours of World IBD Day on behalf of EFCCA.

 

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.

 

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

EFCCA Magazine First Issue 2015

The first issue of the EFCCA Magazine 2015 is now available online. We hope you enjoy reading about our latest activities, news from our members and other interesting articles related to IBD. We would like to highlight our feature article on a training workshop that EFCCA has carried out in Dubai recently with the aim of promoting the establishment of patient support groups in the region. You will also find very inspiring stories such as "Nothing can stop us" by Cristian Garrido and a story written by EFCCA Youth Group Leader, Daniel Sundstein, about his trek to the Mount Everest Base Camp. 

 

Many thanks to those who have contributed to it!!!!
 

Download Magazine Issue 1/2015

 

IBD Hero

IBD Hero

 

We are very saddened to learn that Dr Leon Pecasse has passed away today. Dr Pecasse has been a very important figure for EFCCA and his vision and engagement to improve life for people with IBD has been an essential contribution for the foundation of EFCCA 25 years ago.

 

Originally from the Netherlands, Dr Pecasse moved to Spain where he studied medicine at the university of Malaga, where he then graduated specialising in IBDs. Being an IBD patient and IBD physician put him in a unique position to provide better support for IBD patients and he also became one of the founding members of ACCU Spain (the Spanish IBD association).

 

Dr Pecasse served as the EFCCA chairman for several years. He will be dearly missed for his warm personality and commitment to EFCCA and as a dear colleague and friend.  

May he Rest In Peace

 

Marco Greco, EFCCA chairman, EFCCA Board and EFCCA staff

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.

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  anniversary and we are looking forward to celebrate this occasion. 

 

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. 

 

 

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.