The South Eastern European CF conference brought experts, health professionals and families from 14 countries together for an unforgettable learning experience! During 3 simultaneous programmes -for patient representatives, allied health professionals and doctors- experts from across Europe taught  on all aspects of the disease and CF care and treatment.

The full programme is available at the conference website http://www.cisticna-fibroza.hr/Dubrovnik2010en/.

Speakers and especially participants were very happy to be able to attend this unique conference.  During the conference it became once more clear that a lot of work still has to be done throughout Europe... The stories we heard about the lack of access to care in some regions was sometimes really shocking.  But if we see how associations who participated at meetings before improved the situation in their country or region considerably in a relatively short time, we are certainly motivated to continue our work.  And we believe this conference was once more and important step forwards in ensuring better access to care and better and longer lives for all people with CF in Europe.

Experts from Belgium, Denmark, France, Croatia, Czech Republic (ECFS) and the UK brought excellent presentations and stimulated all participants to obtain better CF care, not only because of their convincing expertise but also because of their enthusiasm and positive attitude.

“It was a great honour and pleasure for me to be invited at the CF conference in Dubrovnik
We are on the good way for the future... “Vous pouvez compter sur nous””

“The conference was very interesting for me as well: I learned many interesting and new things.  I also believe that CF EUROPE is really important, it’s something you really feel when you are present at this meeting… You have to keep on organizing exchanges, partnerships and so on, they can learn from us and we can learn from them !”

“It was a great pleasure for me to meet old and new friends and colleagues in Dubrovnik, and I was delighted to have this opportunity. I hope that some of my contributions were helpful, and look forward to seeing you at CF events in the future. You are doing a great job.”

“It’s a great job to offer countries where the CF care isn’t what it should be, the opportunity to learn and to improve. Each child, each family, wherever in the world, has the right to get optimal care.
And, if I can continue to help to reach this purpose, don’t hesitate to ask me! ,

“I was deeply moved by the difficult system in which some of our fellow Europeans have to live !!! It is amazingly frustrating that problems we had in our countries 20 years ago can still exist in Europe?
I am convinced that in a way, CFE are the pioneers that will help elevate this part of Europe to more acceptable pan-European standards.“

“And yes, still a long way to go. It’s heartbreaking, especially if you’ve got CF yourself, to see how people struggle, are “surviving” with the little they have access to (but also amazing to see how some are dealing with it). You meet parents of all these young kids … you realize there are almost no adults with CF. They simply don’t live that long in this region. You see and feel the  grieve, stress, tears … They lack (trained) caregivers, medications and treatments, correct information, support on all levels… so, let’s work!”

We received a lot of very positive echo’s and evaluations from the participants (who originated from Bosnia, Bulgaria, Croatia, Hungary, Lithuania, Macedonia, Montenegro, Serbia and Turkey).  Parents and representatives from associations from Croatia, but also from the regions where access to and knowledge about CF care is still very low, said this meeting meant an important step forwards to them.  Some of the parents described it as a real turning point and essential to work towards better survival of their children.

“Thank you all for help, cooperation and very very nice conference.” (CF Bosnia)

  “I also would like to THANK YOU on all your efforts to bring me over there (it was mission impossible out of your support), to THANK YOU on the organization of the Conference (it functioned just great)...” (CF Macedonia)

“I have the pleasure to convey the sincere gratitude of the Bulgarian participants in the conference for the excellent event and the opportunity to be part of it. They are very satisfied with the conference activities and feel empowered, connected, and ready to take their work to the next level—all because of your great effort. The group unanimously and enthusiastically agreed that the long trip was more than worth it! Thank you again for all your hard work!”  (On behalf of CF Bulgaria)

Another important step taken at this conference was the signing of the CF Dubrovnik Declaration 2010: ”Towards harmonization of Cystic Fibrosis diagnosis and  care for all patients in Europe“ by all the representatives from  participating CF associations, CFE and ECFS.

DECLARATION OF SOUTH EASTERN EUROPEAN AND LITHUANIAN CYSTIC FIBROSIS PATIENT ASSOCIATIONS AND CYSTIC FIBROSIS EUROPE: ”TOWARDS HARMONIZATION OF CYSTIC FIBROSIS DIAGNOSIS AND CARE FOR ALL PATIENTS IN EUROPE“

“The Declaration of us was another bonus to the already achieved results concerning access to the CF treatment in Lithuania. I was in a meeting with Lithuanian parliamentarians supporting us and delivered them the CF Dubrovnik Declaration. Tomorrow will be one more meeting of parliament.”

A lot of people told me in detail how important all the conference was to them...
But the heart of the message was the same for everyone: 
THANK YOU FOR OFFERING US THIS UNIQUE OPPORTUNITY TO LEARN AND SHARE AND MOVE FORWARD TO ENSURE BETTER AND LONGER LIVES FOR ALL OUR CHILDREN WITH CF!

THANK YOU!

• to Anja Kladar, president of CF Croatia for the huge work she did in organizing everything locally and for her warm welcome in beautiful Dubrovnik

• to the sponsors who enabled us to organize this conference.

• to the speakers for their high quality and enthusiastic contributions.

• to the participants for their active participation and willingness to learn and to spread what they learned throughout the region.  You were a fantastic and motivating public. 

KEEP UP THE GOOD WORK!

As soon as we have the approval and/or presentations of the speakers they will be available here online.

For more pictures of the conference see cf.goardatalink.com