EFCCA AGM 2015

EFCCA General Assembly 2015

 

The EFCCA General Assembly will take place in Brussels from 29th to 30th May 2015 .

More information will be made available in due time. 

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]. Russian and Arabic will be made available shortly. 

 

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

EFCCA to co-chair Public Health Day on IBD at UEG Week

EFCCA is going to co-chair the Public Health Day on IBD to take place on 18 October 2014 in Austria on the occasion of UEG Week.

 

United European Gastroenterology (UEG) is organising this Public Health Day at UEG Week 2014 in collaboration with EFCCA, the Austrian Crohn's Disease & Ulcerative Colitis Association (OMCCV), Austrian Coeliac Society (OAZ), Association Of European Coeliac Societies (AOECS) and IBS Support Group (ÖPRD).

 

Members of the public and UEG Week delegates are invited to attend this unique patient information event. Entrance is free of charge but registration is mandatory. This can be done in advance by email or on the day at the Public Health Day counter in the main entrance of the Austria Center.

 

This will be a unique opportunity for patients to hear directly from some of the world’s leading medical experts on the latest developments in Ulcerative Colitis, Crohn's Disease, Coeliac Disease and Irritable Bowel Syndrome. There will also be an opportunity for  patients to talk with medical experts and other patients and to receive information from Austrian patient organisations and support networks.

 

To register for this event, please email the full names of all those attending to:

 

This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Date: Saturday 18th October 2014

 

For more information about UEG Week please visit: https://www.ueg.eu/week/

IMPACT survey

New IMPACT publication

 

On the occasion of World IBD Day, we are making available our latest publication of the IMPACT survey.

 

The survey was a joint project of EFCCA and its national member associations. It was launched in November 2010 and closed in August 2011. IMPACT II is now on-going in several other countries in and outside Europe.

 

The main aim of the survey was to obtain an international perspective of the impact of Inflammatory Bowel Disease (IBD) on patients’ lives. 4,670 online responses that had been received by the close of the survey were included in the analysis. 

 

The survey has received wide recognition from the scientific community and its poster presentation at the ECCO Congress in 2012 was awarded a „poster of distinction ribbon”. It was also recently published in the Journal of Crohn ́s and Colitis.

 

DOWNLOAD latest IMPACT publication

 

IMPACT FACTSHEETS

 

 

 


IMPACT survey

 

 

 

Damage and Disability

 


Diagnosis and health services

 


Treatment

 



Daily Life 

 


Education and Career

 


Other surveys

 

 
EFCCA Recommendations

 


What is IBD?

 

 

 

 

 

 

 

 

 

 

The survey was supported by an unrestricted educational grant from Abbott.

Navigating with AMICI

AMICI, the Italian IBD association has just organized an original and fantastic summer camp under the title "navigating with AMICI".

 

A small group of youngsters with IBD were invited to spend one week on a sailing boat for a unique summer experience. Whilst learning about sailing and visiting interesting places of touristic interest along the Italian coast they most importantly had the chance to forget for a while  their worries and to be  in a supportive environment. The boat with the youngsters was accompanied by another boat with a crew made up by doctors and some of the organizer in case of emergency.

 

The initiative was supported by the regional authority of Tuscany and the provincial authority of Livorno and mayors welcomed the kids in the cities visited by the kids.

 

The trip has just completed with everyone safe and with very happy smiles on their faces. We cant wait to share the first impressions from our young ones. In the meantime we leave you with some photos taken during the trip..

 

For more information:

 

http://www.amiciitalia.net/