Our ePAG Representatives

ERN eUROGEN Patient Advocacy Group (ePAG) Representatives

Dalia Aminoff (ERN eUROGEN ePAG Chair), AIMAR

Associazione Italiana per le Malformazioni Anorettali (AIMAR, Italian Association for Anorectal Malformations) is 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.

Serena Bartezzati, AICI

Associazione Italiana Cistite Interstitiale (AICI, Italian Association for Interstitial Cystitis) represents 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.

Claire Harkin, KSA

Klinefelter’s Syndrome Association (KSA) is 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.

Robert Cornes, Orchid

Orchid is 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

John Osborne, patient

John was diagnosed with aggressive stage-three penile cancer in 2016 and had three operations to cut away cancerous cells.  Since receiving the all-clear later that year, he has become an ambassador for Orchid and tried to encourage men to talk about the illness in a bid to raise more awareness of the disease so that anyone who thinks they may have it will seek medical advice quickly and without embarrassment.

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

Kenneth Manzie, patient

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

Christian Groen, Patiëntenvereniging voor Blaasextrophie Nederland

The Patiëntenvereniging voor Blaasextrophie Nederland (Patient Society for Bladder Exstrophy) is the Dutch association for patients (and their families) with epispadias, classical bladder exstrophy and cloacal exstrophy.  They aim to inform members about the latest news regarding developments in the field of bladder exstrophy and offer patients and parents of patients the opportunity to contact each other.

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

Nicole Schwarzer, SoMA

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

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).