ECPC is the largest European cancer patients' umbrella organisation
Discover ECPC's beginning
Kathy Redmond and Lynn Faulds Wood both conside
red important that European cancer patients speak with one voice and joined forces to set up the European Cancer Patient Coalition.
They admired what the Dutch had achieved with their national patient umbrella organisation – NFK – with funding from a forward-thinking Health Minister Els Borst-Eiler
A meeting between Kathy Redmond from the European School of Oncology and Lynn Faulds Wood, a UK TV presenter who had survived advanced colon cancer in 2002 set the seeds for what later was to become ECPC. NFK’s Director Patricia Huijbregts agreed to set up the administrative heart of the new Coalition. A Steering Group was formed with Lynn as Chairman and three-year funding for Masterclasses & Educational activities from the European School of Oncology.
ECPC was officially launched at ECCO 2003 in Copenhagen at a press conference with Kathy and Lynn.
The aim of ECPC, under the motto “Nothing About Us, Without Us!”, was to represent the views of cancer patients in the European healthcare debate and to provide a
forum for European cancer patient organisations to exchange information and share best practices.
Kathy organised the first Masterclass in Cancer Patient Advocacy at the prestigious European Institute of Oncology in Milan, with an impressive list of speakers including Mrs Borst-Eilers; Umberto Veronesi, Europe’s leading breast surgeon and director of the Institute; and a Brussels-based political lobbyist, cancer survivor Hildrun Sundseth. One hundred people from organisations in 30 countries attended the first Masterclass.
Members of the Steering Group included Jan Geissler, a young, energetic CML survivor with a keen interest in creating a pan-European clinical trials registry; oncologist Dr. Jesme Fox who specialised in lung cancer and gave up being a doctor to campaign for patients, for better research and treatment; Tom Hudson, CEO of the Irish Cancer Society.
Following the first Masterclass, Hildrun Sundseth joined ECPC in 2004 as Head of EU Policy.
Hildrun Sundseth gave a new impetus to ECPC and cancer patient advocacy by introducing new strategic alliances and building the organization’s outreach. It was her idea to set up MEPs Against Cancer, with Alojz Peterle, as group leader, and it was her strategic skills, which ensured that cancer was on the official European Parliament agenda. Hildrun ran the Secretariat for MEPs Against Cancer until 2010.
ECPC played a key role in the preparation and launch of the Cancer Plan by the Commission in September 2009 and Hildrun helped in promoting the role of patients.
ECPC's 1st Steering Committee
Steering Committee members:
Heide Preuss (Germany), Mamazone
Ekke Büchler (Austria), Selbsthilfe Prostatakrebs
Jan Geissler (Germany), Leukaemia Online
Tom Hudson (Ireland), Europa Uomo – European Prostate Cancer Coalition
Claudia di Loreto (Italy), Italia Malati di Cancro (AIMaC)
Patricia Huijbreghts (Netherlands), Dutch Federation of Cancer Patients’ Organisation (NFK)
Jesme Baird (UK), Roy Castle Lung Cancer Foundation
Lynn Faulds Wood (2003 - 2010)
Tom Hudson (2010 - 2013)
Francesco De Lorenzo (2013 - Present)