Dissemination & Collaboration

Dissemination & Collaboration

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Cross-ERN Collaboration

The members of ERN eUROGEN currently collaborate with the following other European Reference Networks:

  • ERN ERNICA: The European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies (ERN ERNICA) covers malformations of the digestive system (with working groups for oesophagal diseases, intestinal diseases, intestinal failure and gastroenterological diseases) and malformations of the diaphragm and abdominal wall (with working groups for malformations of the diaphragm and abdominal wall defects).  These disorders have an early manifestation in life and need multidisciplinary care and long-term follow-up.
  • ERN ERKNet: The European Reference Network for Rare Kidney Diseases (ERN ERKNet) is a consortium of 38 expert pediatric and adult nephrology centres in 12 European countries providing healthcare to more than 40,000 patients with rare disorders of the kidneys.
  • Endo-ERN: The European Reference Network on Rare Endocrine Conditions (Endo-ERN) aims to improve access to high-quality healthcare for patients with hormonal disorders. Endocrine conditions are often complex and require a long period of care due to chronic disease without being life-threatening. Therefore, endocrine care requires equal distribution of paediatric and adult care.
  • ERN ITHACA: The European Reference Network for Intellectual Disability, Telehealth, Autism and Congenital Anomalies (ERN ITHACA) meets the needs for highly specialized, multidisciplinary healthcare for patients with rare (multiple) malformation syndromes and rare intellectual and other neurodevelopmental disorders of genetic, genomic/chromosomal or environmental origin, both diagnosed and undiagnosed.
  • ERN TransplantChild: The European Reference Network for Paediatric Transplantation (ERN TransplantChild) focuses on both Solid Organ Transplantation (SOT) and Hematopoietic Stem Cell Transplantation (HSCT) which are low-prevalence and complex conditions that require highly specialized expertise and resources.  The network helps patients and family members who are going through or have gone through the complicated process of paediatric transplantation and works to improve the care of patients with this condition.
  • ERN EURACAN: The European Reference Network for Rare Adult Solid Cancers (ERN EURACAN) aims to tackle these complex and rare cancers that require highly specialised treatment and concentrated knowledge and resources.  The management of rare cancers poses significant diagnostic challenges, sometimes with major consequences for patients’ quality of life and outcome. Inappropriate management of these patients may also result in an increased risk of relapse, and risk of death.

Research

Knowledge sharing across the workstreams will foster innovation and allow new treatments or surgical techniques to be tested and made available to patients where there are gaps in current effective diagnoses or treatments. Together with patients, ERN eUROGEN will develop new research programmes and stimulate new studies.

ERN eUROGEN is currently:

European Joint Programme on Rare Diseases: EJP RD

The EJP RD is a programme aiming to create an effective rare diseases research ecosystem for progress, innovation and for the benefit of everyone with a rare disease. We support rare diseases stakeholders by funding research, bringing together data resources & tools, providing dedicated training courses, and translating high-quality research into effective treatments.

It brings together over 130 institutions (including all 24 ERNs) from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.

EJP RD provide funding opportunities, a guide for patients in research, a research translation support office, a clinical studies support office, and ethics and regulatory advice.  They also have a resource map showing coordinated access to data and services.

The ERN Collaborative Platform (ECP)

The ERN Collaborative Platform, known as the ECP, is a secure web-based platform that supports the ERN Board of Member States, the ERN Coordinators and ERNs members in their online communication, document management and event organization. It is not for the exchange of patient data (personal or clinical).

Authorised Users

Registered users can log into the ECP here.

Requesting Access to the ECP

Access to the ECP is strictly regulated to protect data privacy. Only authenticated users (EU Login) can request authorisation (SAAS) from the ERN to use the ECP.

For those who are working in one of our member centres and have not registered, here is a guide to creating your EU Login, and applying for access to the ECP.