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