What are the issues we need to address as an organisation?

Priority Area 1: Improving FA care systems

  • FA information for doctors
  • Endocrinology and gynaecology centres of excellence
  • Focus on Transition to adult care
  • Psychosocial care for young adults (coping and complex decision making):
  • Focus on Quality of life
  • Patient empowerment/Patient-driven approaches to care
  • Clear Guidelines for Standards of Care
  • Equal access to treatment across Europe
  • Connecting patients and clinicians across Europe

Priority Area 2: SCC screening and management 

  • Squamous Cell Carcinoma (SCC) cancer screening and treatment
  • Implementation of research into care paths
  • Equal access to cancer screening

Priority Area 3: Research collaboration across Europe 

  • Registry development and collaboration
  • Tissue banking
  • Improve research collaboration
  • Gene therapy for SCCs. E.g. CAR-T 
  • Establishing funding routes

Priority Area: 4 Set up FA Europe organization

  • FA Europe Organisational Development
    • Document management
    • Structure
    • Finance
    • Legal
    • Decision making
    • Activities
    • Identification of Funding Sources
  • Survey of what works in different countries
  • Clear Guidelines for Standards of Care
  • Equal access to cancer screening
  • Equal opportunities across Europe

Problems to solve

  • Limited FARF resources to provide worldwide support – Europe needs to play a larger role
  • Family Support Organisations only in 9 of 50 European countries
  • Level of care and access to care very variable
  • Adult care and pyschosocial support lacking as previously a paediatric condition
  • Trials limited by small numbers of patients per country
  • Limited research – More collaborations needed to access EC funding
  • Engaging organisations who wish to deal with 1 person/organisation per disease, not per country
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