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Speaker detail

  • Jacquelien J. Noordhoek
  • President CF Europe, CEO Dutch CF Foundation
  • CF Europe, Netherlands

Jacquelien is the executive director of the Dutch CF Foundation (NCFS) since 1998. She started her work when the organization was small with limited capacity in fundraising, patient advocacy, financing research and so on. Nowadays 10 professionals are working for the organization and hundreds of volunteers; fundraising developed to a professional level and the influence of the organization on the quality of the CF health care has grown substantially. The Dutch CF Foundation sets the agenda in research in The Netherlands, with a research program that is prioritized by the patients themselves. This program is acknowledged internationally. Her organization developed the format of institutionalized patient participation.

Jacquelien is trained in Social Sciences and in Business Administration. She is working on her PhD, that is about institutionalized patient participation. Jacquelien is chairwoman of the Dutch CF-Registry.
In 2015 she was elected as president of CF Europe, the European federation of 41 CF national CF organizations.

She is a team player, with an eye for strategy and a strong leader too. She has an expert reputation in representing the patients’ perspective and gives talks on this topic regularly. Jacquelien Noordhoek has a national and international experience in giving speeches, presentations and workshops about CF and health related topics. She has accurate networks, admission to social media, she is media-trained. She’s involved in discussions concerning access to innovative medicine, precision medicine, access to care, big data, (social) innovation, and technology, and ‘science in transition’.