Supporting Partners

Supporting Partners

In addition to ERN Full Members and Affiliated Partners of the ERN networks, there are Supporting Partners. According to the European Commission’s document on terminology issued on 20 June 2018:

“It is proposed to use the term Supporting Partner as a generic term to define healthcare providers, medical societies, and any other entity or individual which, without having a commercial relation with the ERNs and their Full Members or Affiliated Partners, or with the European Commission, contribute in different ways to the work of the networks. When using the term Supporting Partner it shall be clear that it refers to a collaboration with entities and individuals which are neither Full Members nor Affiliated Partners”.

You can read more about ERN eUROGEN’s Supporting Partners below.

Anorectal Malformations Network (ARM-Net) Consortium

The Anorectal Malformations Network (ARM-Net) Consortium is a group of professionals and patient representatives who aim to exchange data and knowledge to improve clinical care and to perform research on congenital anorectal malformations. These are congenital malformations caused by embryonic aberration of the uro-rectal septum. These types of malformations occur in approximately 1: 2500 births.

The Consortium has created a data- and bio-bank of ARM patients, which serves as a base for research on ARM. Local database collections and new database collections will be combined to create opportunities for larger-scaled research. The aims are: to identify genetic and environmental risk factors in the aetiology of syndromic and nonsyndromic anorectal malformations and to harmonize diagnostic classifications, interventions and follow-up to improve outcomes and quality of life of ARM patients.

European Association of Urology (EAU)

The European Association of Urology (EAU) represents the leading authority within Europe on urological practice, research and education. Over 16,000 medical professionals have joined its ranks and contribute to their mission: To raise the level of urological care throughout Europe and beyond.

The EAU aims: to act as the representative body for European urologists to facilitate the continued development of urology and all its supraspecialties; to foster the highest standards of urological care throughout Europe; to encourage urological research and enable the broadcasting of its results; to promote contributions to the medical and scientific literature by its members; to promote European urological achievements worldwide; to establish European standards for training and urological practice; to contribute to the determination of European urological health care policies; to disseminate high quality urological information to patients and public.

With so much of their mission in common, it is clear that the EAU is a natural supporting partner for ERN eUROGEN. Indeed, the EAU’s support was integral during the application process and launch of our network, and continues to the present.

European Paediatric Surgeons’ Association (EUPSA)

The mission of the European Paediatric Surgeons’ Association (EUPSA) is to maintain and promote high clinical standards of surgical care for paediatric and adolescent patients in European countries, to enhance the capacity of its members to discover, disseminate and apply new knowledge to the benefit of their patients, and to follow the highest ethical standards within the field of paediatric surgery.

European Society for Paediatric Urology (ESPU)

The European Society for Paediatric Urology (ESPU) is a non-profit society whose main purpose is to promote paediatric urology, appropriate practice, education as well as exchanges between practitioners involved in the treatment of genitourinary disorders in children.

EURORDIS – Rare Diseases Europe

EURORDIS – Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people worldwide who live with a rare disease.

By connecting patients, families, and patient groups, 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. You can download the EURORDIS factsheet on “The involvement of patient organisations and patients in the European Reference Networks” here.

EURORDIS has introduced the Patient Partnership Framework for the European Reference Networks (ERNs). This innovative guide is crafted to bolster the integration of robust patient partnerships across all stages of ERN activities. Drawing on the accumulated expertise of EURORDIS and the ERNs, insights from analogous frameworks in healthcare settings, and input from a diverse range of stakeholders through a survey, the framework is a comprehensive tool.

International Continence Society (ICS)

The International Continence Society (ICS) is a registered charity with a global health focus which strives to improve the quality of life for people affected by urinary, bowel and pelvic floor disorders by advancing pure, applied and clinical science through education, research, and advocacy.

International Society for the Study of BPS (ESSIC)

The International Society for the Study of BPS (ESSIC) is a non-profit organization for professionals. Its members are scientists and/or medical practitioners from all over the world with an interest in research into and/or treatment of bladder pain syndrome (BPS).

ESSIC’s primary objectives are:

  • to promote and support the study of and research into BPS in the widest sense of the word
  • to provide a forum for professional scientific communication among individuals and groups involved in study and research related to BPS, including the organization of meetings and conferences to exchange research results, experiences and ideas on BPS
  • to establish steering groups for committees to conduct studies on epidemiology, aetiology, treatment and other areas of BPS
  • to establish a database on BPS patients to promote insight into different aspects of BPS.

Individual Experts

Supporting Partner (Individual Expert) agreements enable knowledge sharing by individuals with relevant clinical expertise for the expertise areas covered by ERN eUROGEN whose employing healthcare provider (HCP) has not (yet) had the opportunity to apply to be a Full Member or Affiliated Partner.

So far, ERN eUROGEN has welcomed the following individual experts:

  • John Heesakkers, Maastricht University Medical Center (NL)
  • Paola Midrio, Cà Foncello Hospital, Treviso (IT)
  • Tet Yap, Guys & St Thomas Hospital, London (UK)
  • Stefanie Märzheuser, Universitätsmedizin Rostock (DE)
  • Kay Thomas, Guys & St Thomas Hospital, London (UK)