Patients

Patients

Patients are at the heart of everything that ERN eUROGEN does. The Coordination Team, Strategic Board, and Operational Board are advised by our ERN Patient Advocacy Group (ePAG), which is comprised of ePAG Advocates representing our different Expertise Areas. Our ePAG is supported by EURORDIS.

European Patient Advocacy Group (ePAG)

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.

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/Expertise Area 1.7 Urorectal/anorectal malformations, 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.

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 has been keen to encourage their input. She is happy to respond to people 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/Expertise Area 1.1 Complex genital reconstructions (DSDs).

Steven Leusenkamp

Endorsed by: TBC

TBC

Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 1/Expertise Area 1.2 Bladder exstrophy/epispadias.

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/Expertise Area 1.7 Urorectal/anorectal malformations, 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).

Kate Tyler

Endorsed by: TOFS, a UK-based charity working towards a world in which those born with OA/TOF live long and healthy lives, unconstrained by the impact of being born with these conditions.

Kate is a Trustee of TOFS and is the lead for the Adult TOF Working Group. Her areas of expertise is in VAcTErL, ARM/Cloaca-Volvulus – TOF/OA.

Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 1/Expertise Areas 1.7 Urorectal/anorectal malformations and 2.6 Adult urogenital reconstructive surgery, ePAG Representative on the ERN eUROGEN Guidelines Expert Panel.

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/Expertise Area 2.5 Interstitial Cystitis, ePAG Representative on the ERN eUROGEN Guidelines Expert Panel.

John Osborne

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.

Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 3/Expertise Area 3.1 Penile cancer.

Kenneth Manzie

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.

Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 3/Expertise Area 3.1 Penile cancer.

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/Expertise Areas 3.1 Penile cancer and 3.2 Testicular cancer.

EURORDIS

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

By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.

EURORDIS supports the creation and development of rare disease national alliances and disease-specific European federations and networks.