ePAG Representatives

ERN Patient Advisory Group (ePAG) Representatives

Anne-Laure Aslanian

EURORDIS – Rare Diseases Europe is a unique, non-profit alliance of 949 rare disease patient organisations from 73 countries, working together to improve the lives of the 30 million people living with a rare disease in 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.

Anne-Laure has several years of experience in research and innovation project management and development of international research project proposals. She worked for 4 years in a hospital research institute and in a biomedicine centre in Barcelona to foster the participation of researchers and clinicians in research grants opportunities and to enhance their collaboration in European healthcare initiatives. Anne-Laure joined EURORDIS in March 2019.

Role in ERN eUROGEN: EURORDIS Patient Engagement Manager: managing and supporting eight of the ePAGs that were set up by EURORDIS to ensure meaningful patient advocate engagement across all ERNs. Anne-Laure also leads the communication and knowledge management activities to support the ePAGs and facilitate the exchange of good practices and access to information.

Dr. Cornelia Aust

Selbsthilfegruppe Blasenekstrophie/Epispadie e.V. (the German patient organisation for bladder exstrophy and epispadias) supports adult patients and parents of children born with bladder exstrophy and epispadias, with practical information, meetings and information exchange concerning medical treatments and issues of daily life.

When Conny was pregnant with her second child, a bladder exstrophy was diagnosed prenatally. Before her son was born (in July 2013), she got in contact with the German patient organisation for bladder exstrophy and very much profited from the advice she received before and after giving birth. She has been an active member of the patient organisation since and provides advice to other new parents whose children are diagnosed with bladder exstrophy.

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

Dalia Aminoff

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

Nicole Schwarzer

SoMA e.V. 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 or ARM-Net (ERN eUROGEN Supporting Partner).

Robert Cornes

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

Serena Bartezzati

Associazione Italiana Cistite Interstitiale (AICI) is an Italian association representing over 800 patients with interstitial cystitis living across Italy and Italian patients living abroad.

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

Christian Groen

The 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.

John Osborne

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.

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

Kenneth Manzie

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.

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

Michael Aenner

The Lichen Sclerosus Association is a Swiss non-profit association investing over 6,000 hours of voluntary work annually in Europe-wide education and networking/advice for those affected by lichen sclerosus (LS), lichen planus (LP) and vulvodynia.

Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 2/Disease Area 2.3.