Patients are at the centre of ERNs, and this has been the EC’s goal from the outset – a fundamental principle is that they and their representatives should actively participate in the advisory bodies of the networks as key partners. Patients, parents, and families often endure difficult times while seeking a final diagnosis and prognosis for their diseases. By being involved in a pan-European effort, these individuals are empowered and able to make a difference. Therefore, ERN eUROGEN is advised by our ERN Patient Advocacy Group (ePAG), which is comprised of ePAG Advocates who have lived experience of our Workstreams and Expertise. The ERN eUROGEN ePAG comprises Associate Patient Partners, also known as ePAG Advocates, who are patients from European patient organisations representing those affected by rare diseases or complex conditions under ERN eUROGEN’s scope. When Associate requirements are not met, patients can also be involved in ERN eUROGEN as Supporting Patient Partners. To ensure that the patient voice is heard within ERN eUROGEN, its ePAG is included in all activities, for example, giving input on disease coding, setting the research agenda, completing patient surveys in the registry, advising on training and educational activities, and being trained on how to be involved in developing ERN clinical practice guidelines and clinical decision support tools so they can be involved in their production. They are encouraged to join initiatives from the network’s Supporting Partners so that they can make connections and links. The ePAG has two seats on the ERN eUROGEN’s Strategic Board. The following EURORDIS patient groups have endorsed ERN eUROGEN and actively contribute to our mission: Finding patient organisations and representatives in this medical area can be difficult, so new applications from patients to work with ERN eUROGEN are warmly welcomed. 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 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). Endorsed by: Patiëntenvereniging voor Blaasextrofie Nederland, the patient association for bladder exstrophy Netherlands, an association for patients (and their families) with epispadias, classical bladder exstrophy, and cloacal exstrophy. Role in ERN eUROGEN: Member of the Strategic Board, ePAG Representative for Workstream 1/Expertise Area 1.2 Bladder exstrophy/epispadias. 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). 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. Anna currently works for an International Humanitarian Organization in Rome. She has been a member of AICI since April 2016 and was elected as a board member in June 2018. She has participated in the following voluntary activities: Participant at American and European congresses on urology; Participant as a speaker at the “Uno Sguardo Raro” Press Conference in Rome, 2021; Participant giving a testimonial in the short film “Then has arrived her”. 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. Supporting Patient Partner. 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. Independent ePAG Advocate. 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. Independent ePAG Advocate. 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. 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. ERN eUROGEN has worked closely with EURORDIS (a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with rare diseases globally) to increase engagement with urogenital patient organisations and establish the network’s ERN Patient Advocacy Group (ePAG). 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. Surgical correction is key for many rare urogenital diseases and complex conditions. However, it is only one aspect, and care needs to go beyond surgery to form a holistic, life-long approach, optimising patients’ development, confidence, and independence.Patients
European Patient Advocacy Group (ePAG)
ePAG Advocates & Supporting Patient Partners
Dalia Aminoff (ERN eUROGEN ePAG Chair)
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.
Steven Leusenkamp
Nicole Schwarzer
Endorsed by: Selbsthilfeorganisation für Menschen mit Anorektalfehlbildungen eV (SoMA eV, Self-Help Organisation for People with Anorectal Malformations), the German patient and parent association for people born with anorectal malformation (ARM), Hirschsprung´s disease (HD/HSCR) and cloacal extrophy (EC).
Kate Tyler
Anna De Santis
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.
Serena Bartezzati
John Osborne
Kenneth Manzie
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.
EURORDIS
Common Needs
Diagnosis
Surgery
Ongoing Treatment
Communication
Self-Image and Emotional Well-Being
Life-Long Follow-Up & Transition