Patient advocacy, support and information
European Reference Networks (ERNs) are based on the founding principle of a patient-centred approach. The contribution and perspective of patients and their representatives is key to support the mission of ERNs in improving standards of quality care and clinical research for people living with a rare, complex disease.
With a view to ensuring that patient organisations participate in ERNs’ decision-making processes, EURORDIS – the European rare disease patient organisation – has developed European Patient Advocacy Groups (ePAGs) for each ERN. Each ePAG is represented by well experienced ePAG advocates who can support their patient community’s needs and expectations and work closely with the Coordinator and clinicians of ERNs to enhance access to care and foster research.
Within EURACAN, the ePAG advocates have been selected based on their expertise in one of the ten clinical domains of the network, their advocacy track record and their outreach to the European patient communities covering rare solid adult tumours. Many of them represent European and international rare cancer patient groups.
They work together with EURACAN clinical leads and can participate in different projects such as the development of a EURACAN registry.
List of current ePAG advocates:
Rare cancer of the connective tissue and viscerae (sarcoma)
Rare cancer of the female genital organs and placenta
The European Network of gynaecological Cancer Advocacy Groups – ENGAGe
ePAG representative: Eva Maria Strömsholm
Rare cancer of the male genital organs and of the urinary tract
German Foundation for Young Adults with Cancer
ePAG representative: Timur Ohloff
Rare cancer of the neuroendocrine system
Rare cancer of the digestive tract
Digestive Cancer Europe – DiCE
ePAG representatives: Zorana Maravic & Vassiliki Fotaki
Rare cancer of the endocrine organs
Thyroid Cancer Alliance – TCA
ePAG representative: Judith Taylor
Rare cancer of the head and neck
Rare cancer of the thorax
Rare cancer of the brain and spinal cord
International Brain Tumour Alliance – IBTA
ePAG representative: Kathy Oliver
ePAGs across domains
European Cancer Patient Coalition – ECPC
ePAG representative: Adela Maghear and Francesco de Lorenzo
European Organisation for Rare Diseases – EURORDIS
ePAG representative: Ariane Weinman