Get involved

You can get involved with CF Europe’s work in many ways.

Are you a researcher, a person with CF or a caregiver, a CF company or a donor? Do you want to become a member or a volunteer?

Read more here

How to become a member?

If your organisation is interested in becoming a member of CF Europe, please contact us and you will be sent more information and a membership application form.

How to work with us as a researcher

CF Europe as a partner in your research project 

Stimulating patient-centered CF research is one of CF Europe’s main goals. In order to support research and keep the focus on patients, CF Europe may act as a full partner in international scientific projects. 

Involving the patient community is critical to ensuring that research outcomes have a maximal impact on patients’ lives.  As a federation of national CF associations throughout Europe, we represent about 40 000 people with CF and their families. We are in close contact with our members and therefore have a clear view on the patients’ interests and needs. We are able to recruit participants for on-going studies. We also disseminate scientific results to people with CF, their families, and to the wider public. 

CF Europe is dedicated to be meaningfully involved in research projects. In order to evaluate your research project, we require a completed application form.

Postdoc funding

With the aim to foster basic and translational research on CF, the ECFS and CFE have joined forces to support a number of European postdoctoral 2-year duration Research Fellowships. 

We are currently joint funding the following three postdocs from 2020-2022: Postdoc Photo

A new call for funding in 2022-2024 is now closed. The fellowships awardees will be announced during the ECFS conference in June 2022. For more information, click here.

 

How to work with us as a person with CF or their caregiver

If you are a person living with CF or caring for someone with CF, there are multiple ways to get involved in CFE’s work: 

Volunteering

Both CFE and our member organisations are always looking for volunteers to support the organisational strategy by assisting with specific tasks, or input on working groups. Find your national CF patient organisations in the members list or contact us.

Surveys

CFE’s work remit is only possible from the feedback we receive from the patient community. As such, we we regularly open surveys and consultations to hear what is important to you. You can join the newsletter to be kept informed on the latest opportunities. 

Testimonials

On our website we provide a dedicated place to tell the stories of people with CF, and their families across Europe. We are always looking to share more stories to highlight what it is like to live with CF. If you would like to share your story, please contact us.  

Donations

CFE, as well as the national CF patient organisations, depend largely on fundraising initiatives and donations. Organising a fundraising to support us, goes a long way in achieving our goals to improve the lives of people with CF. If you are interested in fundraising opportunities, please get in touch.

Follow us on social media

Do you want to stay up to date with our latest news? Then please follow us on social media and sign up for our newsletter.

 

How to work with us as a company

CF Europe invites companies addressing CF and related health issues to help ensure that the voice of people with CF is heard by the healthcare industry. Two main ways of getting involved are through the CF Round Table of Companies and through the CF CAB.

CF Round Table of Companies (CFRToC)

Being a member of the CFRToC allows for the direct exchange of views with CF Patient Organisations and with other companies on specific, non-promotion and non-product related topics. To become a member of the CFRToC, companies adhere to the CFRToC code of conduct and make an annual contribution to support the mission of CF Europe. In return, they benefit from the active dialogue between companies and patient organisations. 

Other CF stakeholders and topic experts are invited to share their expertise at CFRToC meetings, to inform meaningful discussion. Examples of past invited guests include: researchers engaged in the European Commission’s HIT-CF project, medical writers engaged with ECFS Clinical Trials Network, experts in gathering real world evidence and members of the CF Europe Patient Organisation Group. 

 There are four levels of CFRToC membership, ranging from 10 thousand to 40 thousand euros and enabling 1 – 4 participants at each meeting.  Benefits of CFRToC membership include:

  • Participation in 2 annual meetings on issues of common interest, suggested by both CFE and companies
  • Mention on CF Europe website and in the annual report
  • Exchange of views with CF patients organisations on European level
  • Exchange of views with other companies on neutral ground
  • Fostering dialogue between CF stakeholders (registry, ECFS-Clinical Trials Network and others)

CF Europe would like to thank our current members of the CF Round Table of Companies.

For more information on the CF Round Table of Companies or if your company is interested in joining, please contact us.

CF EuroCAB

The CF EuroCAB enables companies to gain insight into the characteristics and needs of CF patient communities and receive unbiased advice from patients in order to optimise research and development to best meet patients’ needs and preferences. 

A group of trained patient representatives from 13 different countries, the CF EuroCAB holds confidential meetings with companies to explore issues specific to each company. An agenda and agreement, including fee for service is developed for each meeting. 

The CAB meets bi-annually, either in person or via video conference. 

The goal of the CF CAB is to provide its collective knowledge and expertise in a common endeavor to accelerate research, development, clinical trials and access to effective treatments for CF by:

  • giving input to the Research and Development (R&D) programmes of CF researchers and treatment developers, so that anticipated outcomes are aligned with patients needs.
  • contributing to research and regulation aspects of legal, policy, and ethics issues.
  • fostering partnerships between patients and drug/therapy developers in the CF area by promoting dialogue, the exchange of information, and fostering partnerships between patient communities and other stakeholders, thus keeping the patients’ needs at the centre of CF research and development.
  • improving CF patients’ scientific and technical understanding of CF, their advocacy skills, and their ability to partner with physicians and researchers.
  • creating awareness of the CF CAB and CF in the medical field and national politics.

The benefits of consulting with the CF CAB include: gaining insight into the characteristics and needs of CF patient communities, receiving unbiased advice from patients in order to optimise research, and development to best meet the patients’ needs and preferences, thus improving the recruitment and retention rate of clinical trials.

To date, the CAB has had meetings with the following companies: Boehringer Ingelheim, Chiesi, Mylan, Novartis, Translate Bio, University of Antwerp, Vertex. 

For questions and enquiries related to the CFE CAB, please contact us.

How to support CF Europe

Making a donation will help achieve CFE’s:

  • vision of a future where all people with cystic fibrosis have access to optimal care until a cure is found 
  • mission for people with cystic fibrosis to live a longer and better life 
  • strategy of supporting national patient organisations and building expertise and advocacy capacity for European policy, research and care to drive up standards for everyone living with CF in Europe.

Specifically now, CFE has launched a special fundraising campaign to support local CF organisations to assess and respond to the needs of people with CF in Ukraine and those who have fled Ukraine to neighbouring countries. We welcome all donations on:

BE28 0016 6533 6820 (SWIFT: GEBABEBB)

Please mention ‘support Ukraine’ in your transfer notice.