Another significant milestone in ERN history – CPMS 2.0 mobile app now available for download in the Android and Apple stores. This will increase the convenience of CPMS 2.0 use and the app is enhanced with several new features including:

advanced search audit logs enhanced meeting agendas improved user experience for assistants and admins.

If you are not yet using CPMS 2.0 for #virtual consultations now is the perfect moment to sign up and get started sharing or accessing expertise across the network.

Check out the available manuals and guides including a really [...]

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Our colleagues in the European Registries for Rare Endocrine and Bone Conditions (EuRREB) are excited to announce that the Langerhans Cell Histiocytosis (LCH) module is now live on the Core Registry platform.

This condition-specific module activates automatically once a patient with LCH is entered into the system- making data collection seamless and efficient.

What does the module include?

Clincial features (disease activity, biopsy results, genetic testing, organ improvement) Medical treatment (past and current) Malignancies & comorbidities Patient-reported outcomes via EQ-5D

The full data dictionary is available for download and more information [...]

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Now open! A facilitation window for the MOOC Diagnosing Rare Diseases: from the Clinic to Research and back is open from Monday, May 12, until Friday, July 4.
You can access the course here.

During this period, experts and mentors will be available online to answer participants’ questions and stimulate insightful discussions throughout the course.

This free online course, developed within the European Joint Programme on Rare Diseases (EJP RD), was co-created by ERN ITHACA, ERN GENTURIS, EURORDIS, and the Fondation Maladies Rares.

The MOOC explores key topics in the diagnosis of rare genetic diseases, including:

 [...]

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The FIRENDO (Filiere Maladies Rares Endocriniennes) network will award a grant for the period 2025-2027 to fund a collaborative research project between a FIRENDO member organization and an HCP (Health Care Provider, a healthcare institution) that is a member of the Endo-ERN (European Reference Network on Rare Endocrine Conditions) outside France.

The grant aims to stimulate international collaborative clinical, translational, or fundamental research projects between:

A FIRENDO organization (clinical or research laboratory, clinical department, patient association) – see the directory here, and an Endo-ERN member outside France – see the directory here. The project must focus [...]

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Endo-ERN will have participate in several aspects of the at the Joint Congress of European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE) thanks to our partnership with these organisations.

Endo-ERN will host a booth 44&45 with Endo-ERN ePAGs and our colleagues from EuRREB – stop by and find out more about Endo-ERN’s activities. Our colleagues also prepared posters that are worth a view: Creating Patient Journeys within Endo-ERN European patient advocacy group (Endo-ERN) The European Registries for Rare Endocrine and Bone Conditions (EuRREB): Collecting Core Data Elements and Clinician and Patient-Reported Outcomes The European Registries [...]

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Our colleagues in EuRREB have recently published their Core Registry and e-REC Annual Reports which showcase significant growth in partipation and data collection. Over the past years, the introduction of condition-specific modules has been a key driver of engagement and improving insights into rare conditions.

Core Registry highlights:

Growing participation 51 active centres are now contributing data to the Core Registry 35 centres within ERNs & 16 centers outside ERNs 3980 cases entered since October 2018 by 87 users Advancing Research and Patient Care 11 Condition-specific modules developed across 6 MTGs increasing reporting [...]

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