European Patient Advocacy Group

European Patient Advocacy Group (ePAG)

ERNs are about patients. European Patient Advocacy Groups (ePAGs) bring together elected patient representatives and affiliated organisations to ensure that the patient voice is heard within the ERNs. Our ePAG played a significant role in the establishment of ERN eUROGEN and remains one of our most important advisors, ensuring our care is patient-centred and that patient rights and choices are respected.

EURORDIS is a non-governmental patient-driven alliance representing 974 rare disease patient organisations in 74 countries. They are the voice of 30 million people affected by rare diseases throughout Europe.

The following EURORDIS patient groups have endorsed ERN eUROGEN and actively contribute to our mission:

ePAG Advocates

Dalia Aminoff (ERN eUROGEN ePAG Chair)

Endorsed by: Associazione Italiana per le Malformazioni Anorettali (AIMAR, Italian Association for Anorectal Malformations), a national non-profit organization formed by and for families of children born with anorectal malformations (imperforate anus, cloaca, cloacal exstrophy, VATER/VACTERL associations, urogenital sinus etc.), colorectal disease and any associated defects. Their aim is to improve and enhance children’s quality of life.

Dalia is AIMAR’s founder and president. She has organised several seminars and meetings involving parents, nurses and physicians both on a national and international level, and has provided support for multiple different projects across the field.  Dalia is also actively involved in the ARM-Net Consortium (a European network project for anorectal malformations).

Role in ERN eUROGEN: Chair of the ePAG, Member of the Strategic Board, ePAG Representative for Workstream 1/Disease Area 1.7, Liaison with ARM-Net (ERN eUROGEN Supporting Partner), Member of the Working Groups on: Rare 2030; Patient Survey H-CARE; and the ERN eUROGEN Registry.

Claire Harkin

Endorsed by: Klinefelter’s Syndrome Association (KSA), a charity offering support and information to all affected by or having an interest in, Klinefelter’s Syndrome and XXY (e.g., the medical profession, other public and private bodies and the general public), so that all understand its implications, not only for the individual affected but also for all those with whom they have contact during their lives. The KSA vision is of a world where all affected by KS and XXY related conditions have a timely diagnosis, access to the best treatment, information and support, and where the condition is understood and accepted.

Claire has been a trustee and Honorary Secretary of the KSA since 2019. She has worked hard to expand her knowledge of all aspects of KS/XXY and has demonstrated empathy with those affected. She is clearly committed to improving their lives and she has been keen to encourage input from them. She is happy to respond to people who contact us with questions, or who just want to talk to someone who knows how they feel.

Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 1.

Serena Bartezzati

Endorsed by: Associazione Italiana Cistite Interstitiale (AICI, Italian Association for Interstitial Cystitis) representing over 800 patients with interstitial cystitis living across Italy as well as Italian patients living abroad.

Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 2/Disease Area 2.5, ePAG Representative on the ERN eUROGEN Guidelines Expert Panel.

Nicole Schwarzer

Endorsed by: Selbsthilfeorganisation für Menschen mit Anorektalfehlbildungen eV (SoMA eV, Self-Help Organisation for People with Anorectal Malformations) is the German patient and parent association for people born with anorectal malformation (ARM), Hirschsprung´s disease (HD/HSCR) and cloacal extrophy (EC).

After Nicole’s youngest child was born with an anorectal malformation in 1997, she began working for SoMA and has been Chairwoman since 2000. Nicole is also involved in CURE-Net (a research project for urorectal malformation) and ARM-Net (a European network registry project for ARM). She gives presentations at national and international congresses on a regular basis about life with ARM/HD or the results of SoMA’s work, and together with the SoMA team develops and implements various support projects, giving people with ARM, HD and also with cloacal exstrophy a positive perspective and a higher quality of life.

Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 1, Member of the Working Group for the ERN eUROGEN Registry, Member of the ERN eUROGEN/ERNICA Cross-ERN Working Group on ARM/HD, Member of ARM-Net (ERN eUROGEN Supporting Partner).

Robert Cornes

Endorsed by: Orchid, the UK’s leading charity working on behalf of anyone affected by or interested in male cancer – prostate, testicular and penile cancer. Orchid exists to save men’s lives from male cancer through a range of support services, education and awareness campaigns and a pioneering research programme.

Rob is the Orchid Male Cancer Information Nurse. Rob qualified as a Registered General Nurse (RGN) in 1991, and has worked as a staff nurse, charge nurse, clinical trials nurse and a uro-oncology clinical nurse specialist, where he was the designated key-worker for anybody diagnosed with a urological malignancy. Rob has met literally thousands of men affected by male cancer and gained a valuable insight into the sort of information that they need. He is a firm advocate of both written and verbal information, having learnt from experience that both make a huge difference for patients and their families.

Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 3

Kenneth Manzie

Endorsed by: Orchid

Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 3.

John Osborne

Endorsed by: Orchid

Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 3.

Annual Meeting of the European Patient Advocacy Groups (ePAGs)

The 2021 European Patient Advocacy Groups (ePAGs) meeting took place online on 4 & 5 November 2021. The meeting was organised around the theme of shared patient-clinician partnership.  It was an opportunity for ePAG representatives, ERN clinicians and ERN project managers to discuss patient-clinician partnerships, learn about inspiring examples of collaboration, and explore the development of common practices, behaviours and processes to champion patient-clinician shared leadership/partnership.

Michelle Battye (ERN eUROGEN Programme Manager) took part in the panel discussion: “How can we make shared patient-clinician leadership “business as usual” in the ERNs?”

You can download the full report of the meeting.