Building Effective Patient Advocacy Through Collaboration Between Patients and Clinicians – EHC
EHC – European Haemophilia Consortium shared a post on LinkedIn:
“Last Saturday in Verona, the EHC joined clinicians, patient representatives, and researchers at the XIX Triennial Congress on the Clinical and Social Aspects of Haemophilia, organised by the Italian Association of Haemophilia Centres (AICE).
In a joint session between AICE, FedEmo, Paracelso, and EHC, our CEO Olivia Romero Lux opened with a talk on ‘Patient advocacy in Europe: what does it mean and what does it take?’
Her message: the strongest advocacy positions are the ones patients and clinicians build together.
Patient advocacy works on two fronts at once, supporting individual patients and families while changing the policies and systems that shape care for the whole community. To be effective, it has to be patient-led, evidence-based, transparent, and collaborative, and that includes working side by side with clinicians.
The session also featured:
- FedEmo (EHC Italian National Member Organisation) with Cristina Cassone and Enrico Ferri Grazzi presenting their national, international, and awareness-raising advocacy activities
- A keynote by Dr Glenn Pierce on ‘A life with and for hemophilia: challenges and achievements’, introduced by Dr Maria Elisa Mancuso
Thank you to AICE for making space for this conversation.”
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