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Jana Pelouchová

Organisation: ECPC – European Cancer Patient Coalition

www.ecpc-online.org

Country: Czech Republic

Mother tongue: Czech

Other languages spoken: English, Russian, partly Spanish

 

 

 

AREAS OF EXPERTISE :

  • East Europe – patient advocacy in access to treatment
  • Needs of patients with chronic myeloid leukemia
  • Patient education programs (format: website, printed material, video), 2006-ongoing
  • Needs of rare cancer patients, breaking the taboo of cancer in East European cultures, improving the doctor-patient dialogue

 

AFFILIATIONS:

  • Leukemia Patient Advocates Foundation, President

 

CONSULTANCY/ADVISORY:

  • Member of CML Horizons Steering committee, organizing CML advocacy global conferences (since 2009)
  • Czech Health Forum – roundtable debate on healthcare reforms (2008-2010)
  • Co-author of the “Psychological care” chapter of the 1st Czech monography on Chronic Myeloid Leukemia, Edgar Faber, Karel Indrak et al., Galen 2011

 

COMMUNICATION SKILLS:

  • Communicating with cancer patients – operating a non-stop telephone help line for leukemia patients (since 2006, ongoing) within Diagnoza CML Czech Republic
  • Communicating the needs of cancer patients at the Czech Health Ministry reimbursement committee (2007-2008)
  • Communicating with oncologists – forming expert advisory committees within the rare cancer patient communities, Czech Republic

 

FINANCE/FUNDRAISING:

  • Fundraiser for Diagnoza CML –patient society, Czech Republic

 

MEDIA CONTACTS:

  • Medical Tribune Czech Republic (1 article published), Czech TV1 (2 interviews), Oncology news (1 article published)

 

NETWORKING:

  • Co-founder of CML Advocates Network, 2007

 

OUTSIDE COMMITMENTS:

  • Rare Cancers Action Group, ECPC
  • RCE – Rare Cancers Europe, ESMO
  • Diagnoza CML patient society, Czech Republic

 

PROFESSIONAL EXPERIENCE:

  • Prior to being diagnosed cancer, worked for 27 years at a diplomatic mission in Prague

 

TECHNOLOGY:

  • Skills to organize workshops/conferences tailored to the needs of rare cancer patients (experience within Diagnoza CML: 5 events/yearly with 30-70 participants)

 

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