2026-10-25T00:00:00+02:00
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Session title Perspectives from Patients and Parents Living with Rare Skeletal Disorders
Date and time 18 September, 2026 at 12:10 – 13:10 CEST
Description A joint EPOS–ERN BOND session placing the patient perspective at the centre of discussions on the challenges and priorities in rare skeletal disorders, with contributions from leading European representatives of patient organisations and caregivers.
Chair Luca Sangiorgi
Speakers
  • Liana La Forgia (UK) Multiple Osteochondromas (caregiver) A.C.A.R. APS (International Relations Manager) & ERN BOND ePAG
  • Susana Noval Iruretagoyena (Spain) Achondroplasia (caregiver) Fundación ALPE Acondroplasia (President) & ERN BOND ePAG
  • Alessandra Tolaccia (Italy) Osteogenesis Imperfecta (patient) Osteogenesis Imperfecta Federation Europe (Vice-President)

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