Collaboration

The ERN Collaborative Platform (ECP) is a secure web-based platform that supports the ERN Board of Member States for ERNs (BoMS), ERN Coordinators, and ERN members for online communication, document management, and event organisation. It is not for exchanging 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 working in our Healthcare Providers who are not registered, here is a guide to creating your EU Login and applying for access to the ECP

As its name suggests, the Joint Action on Integrating ERNs into National Health Systems (JARDIN) aims to improve access to the European Reference Networks (ERNs) by integrating them into national systems. The vision is to put people living with rare diseases or complex conditions at the centre of care and make the care pathway clear and easily accessible.

JARDIN’s activities will include the identification and exchange of best practices, the development of concrete recommendations, guidelines and patient pathways, and toolboxes suited for the needs of all Member States (taking into account the different preconditions, such as size and population, economy, and structure of the respective healthcare system), as well as supporting capacity-building and performing pilot implementation steps on different levels in the Member States in the proposed fields of action.

JARDIN will develop strategies for systematic dissemination of information on the ERNs, with a specific emphasis on people living with rare diseases (PLWRD) as well as the healthcare professionals community.

• JARDIN website
• Subscribe to the JARDIN newsletter and/or read past issues
• Follow JARDIN on social media: Facebook – Instagram – LinkedIn – X – YouTube
• EURORDIS JARDIN Explainer: “JARDIN 101: The Purpose. The Plan. The Potential”

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.

ERN eUROGEN’s research strategy aims to harness the collective research potential of all ERN eUROGEN’s healthcare providers and patients. Knowledge sharing 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.

ERN eUROGEN’s research activity focuses on its patient registry, but the network also collaborates with other initiatives, as outlined below.

ERDERA

The European Rare Diseases Research Alliance (ERDERA) is a major European research partnership with an estimated budget of €380 million running through 2031, with about €150 million contributed by the European Union via Horizon Europe and the rest from member states and public-private partners. It aims to improve the lives of the 30 million people living with rare diseases in Europe and beyond.

The network unites over 170 public and private organisations, including researchers, hospitals, funders, and patient groups—across 37 countries. It builds on the legacy of previous EU initiatives like the European Joint Programme on Rare Diseases (EJP RD), Solve-RD, and ERICA.

ERDERA’s core goals are to:

• Accelerate Diagnostics: Work toward achieving a six-month diagnosis timeframe for currently undiagnosed rare disease patients using advanced genomic tools and artificial intelligence.
• Boost Therapeutics: Support the development of new treatments, aiming to help foster 1,000 new therapies.
• Reduce Fragmentation: Pool fragmented knowledge, data, and funding resources across borders to bridge the translation gap between science and real-world patient care.

Further information:

• ERDERA website
• EURORDIS ERDERA Explainer: “ERDERA 101: Europe’s New Chapter in Rare Disease Research”
• CORDIS EU Research Project Fact Sheet 

ERICA

The European Rare Disease Research Coordination and Support Action consortium (ERICA) officially concluded its project lifecycle on 31 August 2025, after running for four and a half years. It received funding from the European Union’s Horizon 2020 research programme to build an integrated platform for rare disease research and innovation. 

The project connected 29 partners, including all 24 European Reference Networks, EURORDIS, Orphanet, and EATRIS, to boost knowledge sharing, enhance the quality and impact of clinical trials and improve patient involvement through transdisciplinary research groups, and concluded its operational phase with final meetings and conferences, leading to a collection in the Orphanet Journal of Rare Diseases.

ERN eUROGEN regularly participated in ERICA activities, such as its General Assembly and working group meetings.

European Joint Programme on Rare Diseases (EJP RD)

The European Joint Programme on Rare Diseases (EJP RD) officially ended on 31 August 2024 after completing its 5.5-year funding cycle under the European Union’s Horizon 2020 framework and transitioned its work into the European Rare Disease Research Alliance (ERDERA).

During its run, the EJP RD successfully unified a fragmented research ecosystem across 35 countries. It closed with significant achievements across funding, data integration, clinical translation, and education. The programme’s major accomplishments were:

1. Robust Research Funding & Resource Mobilisation

• Massive Financial Investment: Mobilised over €101 million (including €55 million directly from the European Union) to fund collaborative transnational research projects.
• Joint Transnational Calls: Successfully launched 15 Joint Transnational Calls (JTCs) to co-fund high-priority international research.
• Targeted Allocations: Directed over €30.5 million into 22 projects focused on accelerating patient diagnosis, and €24.5 million into 18 pre-clinical projects developing rare disease therapies.

2. Launch of the EJP RD Virtual Platform

• FAIR Data Ecosystem: Built a cutting-edge, federated EJP-RD Virtual Platform allowing registries, biobanks, and genomics databases to connect securely.
• Privacy-First Sharing: Enabled researchers to query remote resources across international borders without compromising patient privacy or removing data from its original source.

3. Accelerated Translation & Clinical Innovation

• Regulatory Collaborations: Advanced new methodologies for small-population clinical trials, which led to a direct partnership with the European Medicines Agency (EMA) to speed up drug approvals.
• Practical Toolboxes: Created the Innovation Management Toolbox and the Rare Diseases Clinical Trials Toolbox to guide scientists from lab-bench discoveries to real-world healthcare applications.
• Scalable Mentoring: Provided specialised mentorship to dozens of research projects, a model later adopted by the European Commission to manage other EU-funded rare disease initiatives.

4. Stakeholder Training & Patient Empowerment

• Massive Educational Reach: Trained over 10,000 researchers, clinicians, and patients via specialized mentoring and online programs, including a dedicated Massive Open Online Course (MOOC) on diagnosing rare diseases.
• Patient-Centric Research: Directly funded and integrated 92 Patient Advocacy Organisations (PAOs) into the design and execution of research, ensuring patient voices shaped treatment strategies.By aligning national research policies across Europe and beyond, the EJP RD established the foundational tools, standards, and networks that ERDERA now utilizes.

ERN eUROGEN was involved in several successful applications for EJP RD funding, including:

• Two ERN Research Training Workshops on innovative diagnostics and interdisciplinary treatment for spina bifida and other dysraphisms, in March 2022 and June 2023.
• A Research Mobility Fellowship on Urogenital Tumours in 2022.
• An ERN Research Training Workshop on Psychology in Rare Diseases (RARE TOGETHER), from 8-9 May 2023.

Rare 2030

Rare 2030 was a two-year foresight study funded by the European Commission that gathered the input of over 250 experts from across the rare disease community (patients, practitioners, and key opinion leaders) to propose a roadmap and policy recommendations to improve diagnosis, treatment, care, and research for the 30 million people living with a rare disease in Europe.

The project concluded in February 2021 by issuing eight overarching recommendations focusing on harmonised diagnostics, holistic care, data sharing, and increased investment.

ERN eUROGEN had three members in the expert group. They attended several virtual meetings of the Rare 2030 “Panel of Experts”, along with many other stakeholders, to validate the trends and drivers that were identified, ranked, and prioritised throughout the year to define possible future trends important for rare diseases. They also contributed comments ensuring that highly specialised surgery was included in the recommendations, along with other important treatment options for patients with rare diseases and complex conditions.

Further information:

• Rare 2030 website
• EURORDIS Overview of Foresight Study Findings

Over the last few years, it has become clear that international organisations are becoming increasingly interested in the innovative ERN model of using secure digital technologies to connect clinical and patient experts on rare diseases and complex conditions with healthcare professionals and patients seeking advice or information.

This is one of the strengths of the ERN model, and the transparent funding from the European Commission means that the products developed by the ERNs (e.g., clinical practice guidelines and clinical decision support tools, publications, and protocols and documents related to registry development, such as Joint Research Centre (JRC) core datasets, informed consent, and data sharing agreements between healthcare providers, etc.) can be shared with other organisations as examples of good practice during collaborative exchanges.  We believe that some “quick wins” are possible through collaborations around the development of the ERN eUROGEN registry.

On 30 November 2022, the European Commission launched the EU Global Health Strategy to improve global health security and deliver better health for all in a changing world, as an external dimension of the European Health Union. The ERNs are waiting to see what this means for them, but one of the aims of the strategy is to expand the EU’s international partnerships on health, which ERN eUROGEN has already been doing through its global collaborative partnerships.

Some examples of these global collaborative partnerships are listed below. Our full Global Collaboration Strategy can be downloaded here. 

CureforU

Since March 2022, a Memorandum of Understanding (MoU) has been signed and in place between ERN eUROGEN and CureforU,  The aims of collaboration are:

• To facilitate healthcare professionals from developed and developing countries to connect, collaborate and learn from each other through CureforU’s digital collaboration portal and share knowledge of best practices gained from using the ERN Clinical Patient Management System (CPMS).
• To deliver faster specialist evaluation and more equitable access to high-quality diagnoses, treatment, and care for patients with rare urogenital diseases and complex conditions who need highly specialised assessment and surgery.
• To cover a wide geographical area of European developed countries and developing countries (e.g., Pakistan, Afghanistan, Ethiopia, Turkey, etc.) and help those lacking technology or expertise by providing high-quality, highly specialised services through knowledge exchange.
• To disseminate relevant knowledge and information and promote each other when appropriate.
• To stimulate and contribute to research activities (where possible).
• To develop, exchange, and disseminate clinical practice guidelines and clinical decision support tools and link and/or add data to patient registries when interoperable and feasible.
• To train and educate urologists and surgeons, including through the CureforU mentorship programme and training courses, through the ERN Academy and ERN eUROGEN videos of highly specialised surgeries, and through the mobility of expertise (where possible).

In June 2024, CureforU celebrated three years of facilitating better cures for rare or complex diseases, specifically anorectal malformations and Hirschsprung’s Disease. Read their three-year journey here.

Confederación Americana de Urología (CAU)

Since May 2023, a Memorandum of Understanding (MoU) has been signed and in place between ERN eUROGEN and the Confederación Americana de Urología (CAU) to collaborate on penile cancer. The aims of the collaboration are to:

• To set up a new penile cancer registry for South America (higher incidence rate than the EU).
• To share registry-related protocols to ensure new registries are interoperable at a technical level because the same core data points are used.
• To exchange knowledge on specific data sets for inclusion related to penile cancer.
• To increase research potential – more patients and comparability between regions.

Murdoch Children’s Research Institute

Since April 2022, a Memorandum of Understanding (MoU) has been signed and in place between ERN eUROGEN and the Murdoch Children’s Research Institute in Melbourne, AU, to form a uro-recto-genital collaborative working group on anorectal malformation (ARM) innovations. The aims of this group are to:

• To set up a new registry for ARMs for Australia and New Zealand. Isabel Hageman, ERN eUROGEN Registry Assistant, is a PhD candidate being supervised jointly by Prof Ivo de Blaauw (Radboudumc, NL), Sebastian King and Misel Trajanocska (MCRI, AU) and this is the aim of her research and thesis.
• To share registry-related protocols to ensure new registries are interoperable at a technical level because the same core data points are used.
• To exchange knowledge on specific data sets for inclusion related to ARMs.
• To increase research potential – more patients and comparability between regions.

RDI & WHO Collaborative Global Network

In December 2019, Rare Diseases International (RDI) signed a Memorandum of Understanding with the World Health Organisation (WHO).

In 2021, the Collaborative Global Network (CGN) Panel of Experts was set up and Michelle Battye, ERN eUROGEN Programme Manager, was invited to contribute to this work. The panel aims to shape international policy on rare diseases, strengthen health systems to address rare diseases, advance Universal Health Coverage (UHC), and create global networks for patients with rare diseases and link them to existing structures in Europe, such as the ERNs.

Now in its third year, the collaboration focuses on developing a common Operational Description for Rare Diseases and laying the groundwork for the CGN and centres of excellence for rare diseases.