Make Sense Campaign Patient Advocacy Meeting

Following a Patient Advocacy Meeting (PAG) roundtable meeting held in Bucharest, Romania, head and neck cancer PAGs met again in Madrid alongside the European Society of Medical Oncology (ESMO) 2014 meeting. The meeting offered the opportunity to all existing European head and neck cancer PAGs to collaborate for the benefit of patients across the region.

While there is representation for head and neck cancer patients at country level, a need was identified for a united network of PAGs to support people with head and neck cancer at European level in order to share current thinking and best practice. Head and neck cancer remains underdiagnosed, and those who are diagnosed require long-term support needs beyond their diagnosis and initial treatment.

European Head and Neck Cancer Network of founding Members

  1. Belgium: Antwerpse Vereniging voor Gelaryngectomeerden
  2. Croatia: Croatian Club of Laryngectomes
  3. EU: European Cancer Patient Coalition
  4. France: Union des Associations Françaises des Laryngectomises et Mutiles de la Voix
  5. Italy: FIALPO
  6. Poland: Association of Persons with Head and Neck Cancers
  7. Portugal: Associação dos Amigos dos Doentes com Cancro Oral
  8. Russia: Help Patient.ru
  9. The Netherlands: NSvG
  10. Turkey: Dance with Cancer Association

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Meeting Outcomes

The format of the meeting allowed individual groups to acknowledge common goals and challenges and consequently work together to find possible solution. There was also enthusiasm seen amongst the group when sharing new ideas, for example holding a gala dinner in Brussels with the laryngectomised choirs. The meeting also enabled the groups to identify ways in which they can support each other to provide optimal patient care.