EFCCA

Looking back over the past months I am once again amazed by the commitment and dedication shown by the IBD community – EFCCA Member Associations in 30 countries, a Youth Group more and more solid and ready to deliver leaders of tomorrow and ... thousands of volunteers - to tackle the many challenges posed by IBD.

The challenges remain immense and the IBD epidemic is show- ing no signs of relenting, as evidenced by the increasing number of contacts and requests to share information and actions we are receiving from many countries and groups of people of IBD. The prevalence and impact of the disease will continue to grow and we need to keep on working together and amplify our voices.

In this issue we will mainly focus on some of the top priorities of our work plan: patient safety, World IBD Day, our next General Assembly (GA) and our 25th Anniversary. I would also like to pinpoint to an interesting scientific article “Mongersen, an Oral SMAD7 Antisense Oligonucleotide, and Crohn’s Disease . 

It concerns a new drug which is showing promising results in the two trials carried out so far. Of course more trials are foreseen but this new drug has become the talk not only of the medical community but the wider Crohn s community. We will keep you posted on this. I would also like to highlight an interesting series of article exploring alternatives to pregnancy which have been prepared by the EFCCA Youth Group.

I am proud to say that people with IBD are at the centre of our activities and projects and this has resulted in an increasing interest from other organisations and patient support groups to join us. This year, during our 25th General Assembly, we will be welcoming two new members from Greece and Romania to our Federation.

EFCCA is reinforcing advocacy around the importance of fighting against IBD on different levels: the Symposium on Patient Safety on the second day of our GA, on 30 May, is a very important sign of our stronger position in the healthcare community and among the European institutions. We are proud to announce that in- ternationally renowned experts have already confirmed their attendance and we are confident that the proposed debate will offer an excellent opportunity to learn more about biologics and biosimilars and give an opportunity to all our delegates to express their view points, concerns and questions.

Our forthcoming General Assembly will be an important moment for us to strengthen our common work and it will provide us with new opportunities for collaboration as we want to see IBD firmly implanted on political agendas in Europe and beyond.

May is a very important month for the IBD community. On 19 May World IBD Day is officially celebrated and many of our members are planning exciting activities to raise awareness of Crohn s disease and Ulcerative Colitis not only on that day but throughout the whole month of May.

Here, in Brussels, we are organising a big team of runners from over 15 different countries to run at the annual Brussels 20km marathon in order to raise awareness. Most of the runners are people with IBD but we are pleased to say that this year they are also joined by gastroenterologists, family members and friends facing the challenging run of 20 km together with them. In the words of our treasurer Martin Kojinkov, who run the marathon last year “we want to show the world that having a chronic disease does not mean you cannot participate in an active and fulfilling life”.

Other members have come up with great ideas such as asking public institutions to light up their buildings in purple colours on the 19 of May (in the UK and Ireland). Many of these events will feed into the global World IBD Day campaign that is being organised by EFCCA together with its sister organsiations such as Crohn s and Colitis of America, Crohn s and Colitis Australia and many more. We have launched a video campaign giving space for people from all over the word to be heard on 19 of May under the headline #UnitedWeStand2015. You will find out more in this issue.

It’s wonderful to see so many countries coming together in our joint effort to raise awareness for these devastating diseases and I am sure we will succeed in our endeavour. I look forward to working alongside you all and to celebrating our 25th anniversary in the hope that our efforts and dreams will lead us to a stronger and more and more effective IBD community.

United we stand!!

Marco Greco, EFCCA Chairman