Next month will see cystic fibrosis (CF) organisations across Europe unite in support of CF Week to fight for better and longer lives for all people living with CF. Ahead of the event, we spoke to Hilde De Keyser from CF Europe to find out about their activities and how they will be marking the day.
Can you tell us a bit about CF Europe?
Cystic Fibrosis Europe was founded approximately 10 years ago. It is the federation of the national patient organisations of people with CF. Currently we have members in 39 European countries. The ultimate goal of our organisation is to find a cure for the disease. We do this through exchange of know-how and expertise, empowering of the national patient organisations, advocacy, supporting CF and patient-oriented research and collaboration with other stakeholders, such as healthcare professionals, researchers, decision makers etc.
How did you become involved in the organisation?
Unlike many people working for CF I don’t have a personal link to the disease. I got involved because I wanted to work in an organisation that really tries to make a difference in the lives of people who are ‘more vulnerable’. I found a very warm, engaged CF community working together to reach the same goal. It is a very motivating environment. I hope I will be able to contribute to the fight for better and longer lives for people with CF, and to continue to fight against CF for many more years.
What are your big milestones this year?
2013 has been a busy year. We’ve had two major conferences and the European CF week coming up next month. During the annual meeting we had workshop on high impact patient advocacy and adult care, an increasingly important issue for the CF community. Together with the European Cystic Fibrosis Society (ECFS) we try to continue to improve the care for people with CF and adapt the care to the changing population.
How will you be marking European CF Week?
This year CF Awareness week is not only an important moment for the national associations but also for CF Europe. Once every 3 years we add a European dimension to the campaign. This year, we will have a session in the European Parliament, hosted by Bart Staes (Belgian MEP) and presenting the important challenges the CF community faces and the importance of implementing European standards of care. We will address the European policy makers alongside medical and research representatives on November 14th.
What are the challenges you face?
The CF community is a strong community where stakeholder cooperation is not just a concept but a reality. What we lack is interest from funders and from politicians, as we represent such a small group of patients.
What changes would you like to see in the future?
We would like to see equal access to quality care all over Europe. The quality of the care needs to further improve and in many countries access to care, to medicines and to information is still a major challenge.
What are you most proud of in your organisation?
CF Europe is an organization of, for and from patients, really representing the CF patients all over Europe and at the same time an important partner for researchers, health care professionals and other stakeholders.
Is there anything else you’d like to share with our readers?
Cystic fibrosis is more than a lung disease but I believe we all fight for optimal care and the best possible quality of live for people with a chronic disease. We are happy to find partners in this common fight all around Europe, especially our colleagues of ELF.
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