Discover ECPC’s beginning

2002

Kathy Redmond and Lynn Faulds Wood both considered 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.

2003

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.

2004

Following the first Masterclass, Hildrun Sundseth joined ECPC in 2004 as Head of EU Policy.

2006

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.

2009

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

Chairman: Lynn Faulds Wood (UK, Cancer Survivor)

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, Associazione Italiana Malati di Cancro (AIMaC)

Patricia Huijbreghts (Netherlands), Dutch Federation  of Cancer Patients’ Organisation (NFK)

Jesme Baird (UK), Roy Castle Lung Cancer Foundation

ECPC’s Presidents

Lynn Faulds Wood (2003 – 2010)

Tom Hudson (2010 – 2013)

Francesco de Lorenzo (2013 – 2019)

Kathi Apostolidis (June 2019 – Nov. 2020, March – May 2022)

Ken Mastris (Dec. 2020 – March 2022)

 

Former ECPC Boards

ECPC Board Members 2022 – 2025

Francesco de Lorenzo – President

Jana Pelouchova – Vice President

George Kapetanakis – Secretary

Evgenia Aleksandrova – Treasurer

Maria Begona Barragan-Garcia – Board Member

Alin Bujan – Board Member

Jacob Landsmann Hansen – Board Member

ECPC Board Members March 2022 – May 2022

Kathi Apostolidis – President & Treasurer

Matti Jarvinen – Secretary

Alina Comanescu – Board Member

Maude Andersson – Board Member

Maria Begona Barragan-Garcia – Board Member

 

ECPC Board Members Dec. 2020 – March 2022

Ken Mastris – President & Treasurer

Jacqueline Daly – Secretary

Robert Green – Board Member

Matti  Jarvinen  – Board Member

Kathi Apostolidis – Board Member (June 2019 – Nov. 2020, March – May 2022)

Radu Ianovici – Board Member

ECPC Board Members 2019 – 2020

Kathi Apostolidis – President

Pietro Presti – Vice President

Jacqueline Daly – Secretary

Beata Ambroziewicz -Treasurer

Maude Andersson – Board Member

Vasile Ianovici – Board Member

Robert Greene – Board Member

 

ECPC Board Members 2016 – 2019

Francesco de Lorenzo – President

Kathi Apostolidis – Vice President

Jana Pelouchová – Secretary

Andrew Winterbottom – Treasurer

Maude Andersson

Matti Jarvinen

Ken Mastris

 

ECPC Board Members 2013 – 2016

Francesco de Lorenzo – President

Kathi Apostolidis – Vice President

Vlad Voiculescu – Treasurer

Jana Pelouchova – Secretary

Sarah Lindsell

Rafal Swierzewski

Elena Caruso

 

ECPC Board Members 2010 – 2013

Tom Hudson – President

Francesco de Lorenzo – Vice President

Henk Van Daele – Treasurer

Jana Pelouchova – Secretary

Ingrid Kossler

Šarūnas Narbutas

Simona Ene

 

ECPC Board Members 2009 – 2013

Lynn Faulds Wood (President)
Tom Hudson
Sandy Craine
Simona Ene
Evgeniya (Jeni) Adarska
Luminita Andreescu
Heide Preuß
Tom van der Wal

ECPC Board Members 2005 – 2009

Lynn Faulds Wood, President, Lynn’s Bowel Cancer Campaign (UK)

Tom Hudson (Ireland) Vice President, Europa Uomo, Men Against Cancer (IE)

Jan Geißler, Vice President, Leukaemie-Online.de (DE)

Elisabetta Iannelli, Secretary,Italian Association for Cancer Patients, relatives and friends – AIMaC (IT)

Panayiotis E Mallis, Treasurer,  The Cyprus Association of Cancer Patients and Friends (CY)

Heide Preuß, Mamazone women and genomics against breast cancer (DE)

Jesme Baird, The Roy Castle Lung Cancer Foundation (UK)

Harm Jan Roelants, Dutch Federation of Cancer Patients’ Organizations – NFK (NL)

Kees van Bezooijen, Contact group Leukaemia (NL)

 

Please find enclosed more relevant documents about the first years of ECPC life on mission, actions, a survey on activity and interests of EU cancer patients’ organizations:

ECPC Sustaining Partner Meeting, Paris 2005

Minutes from the first Board Meeting, 2005 

ECPC keypad voting results, 2005

 

Scientific Committee

The Scientific Committee of ECPC was chaired by Past President Francesco de Lorenzo from June 2019 until December 2020. Francesco de Lorenzo is a colon cancer survivor with 22 years of experience in patient advocacy, capacity building, research, networking building, policy, partnership and project design and management. In ECPC since 2004: from 2010 to 2013 as Vice President, from 2013 to 2019 as President, now as Past President and Chair of the Scientific Committee. His vision during the Presidency was to work towards Europe of Equality, where all European cancer patients have timely and affordable access to the best treatment and care available. He has been Member of the European Commission Expert Group on Cancer Control (2014/2018) and co-author of the European Cancer Patients’ Bill of Rights.  In collaboration with MEPs, proposed amendments to the Work-Life Balance Directive, which have now been included in the Directive and include formal recognition of the role of the carer. Involved in several European research projects and collaborating with the consortium Cancer Core Europe in the Board of Directors. Board member of the European Academy of Cancer Science (EACS) and of the Cancer Drug Development Forum (CDDF).  Has been successfully working on the development of amendments to Health Technology Assessment (HTA) Regulation to harmonise HTA at the EU level, a policy recommendation first outlined in the ECPC position paper “Challenging the Europe of Disparities in Cancer” in 2015, highlighting that patients play a crucial role in advancing policies. Presently he is also President of the Italian Federation of Cancer Patients Organisation (FAVO – www.favo.it), President of the Italian Association for Cancer Patients (Aimac – www.aimac.it) and full Professor of Biochemistry at the University Federico II of Naples.