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)

Sarcoma Patients Euro Net – SPAEN
ePAG representatives: Estelle Lecointe and Markus Wartenberg
sarcoma-patients.eu

Info Sarcomes
ePAG representative: Estelle Lecointe
infosarcomes.org

Rare cancer of the female genital organs and placenta

The European Network of gynaecological Cancer Advocacy Groups – ENGAGe
ePAG representative: Eva Maria Strömsholm
engage.esgo.org

 

Rare cancer of the male genital organs and of the urinary tract

German Foundation for Young Adults with Cancer
ePAG representative: Timur Ohloff
junge-erwachsene-mit-krebs.de

 

Rare cancer of the neuroendocrine system

International Neuroendocrine Cancer Alliance – INCA
ePAG representatives: Teodora Kolarova and Catherine Bouvier
incalliance.org

Neuroendocrine Cancer UK
ePAG representative: Catherine Bouvier
neuroendocrinecancer.org.uk

Rare cancer of the digestive tract

Digestive Cancer Europe – DiCE
ePAG representatives: Zorana Maravic & Vassiliki Fotaki
digestivecancers.eu

 

Rare cancer of the endocrine organs

Thyroid Cancer Alliance – TCA
ePAG representative: Judith Taylor
thyroidcanceralliance.org

 

Rare cancer of the head and neck

Associazione Italiana Laryngectomizzati – AILAR
ePAG representatives: Roberto Persio
ailar.it

Salivary Gland Cancer UK – SGC UK
ePAG representative: Emma Kinloch
salivaryglandcancer.uk

Rare cancer of the thorax

Pending confirmation

 

Rare cancer of the skin and eye melanoma

Melanoma Patient Network Europe – MPNE
ePAG representatives: Ian Galloway
melanomapatientnetworkeu.org

Melanom Info Deutschland – MID
ePAG representative:Petya Zyumbileva
melanominfo.com

Rare cancer of the brain and spinal cord

International Brain Tumour Alliance – IBTA
ePAG representative: Kathy Oliver
theibta.org

 

ePAGs across domains

European Cancer Patient Coalition – ECPC
ePAG representative: Adela Maghear and Francesco de Lorenzo
digestivecancers.eu

 

ePAGs coordinator

European Organisation for Rare Diseases – EURORDIS
ePAG representative: Ariane Weinman
eurordis.org

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