NOW OPEN: Call for Poster Abstracts – ECRD 2026

The 13th European Conference on Rare Diseases & Orphan Products (ECRD 2026) will take place 3–4 June 2026, in person in Prague and online. Organised by EURORDIS-Rare Diseases Europe, co-organised by Orphanet, and supported by AFM-Téléthon, ECRD is Europe’s largest, patient-led, policy-shaping event for the rare disease community. The 2026 edition, titled Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases, will mark the launch of a multi-stakeholder process to develop a European Action Plan for Rare Diseases.

Poster abstract submissions for [...]

Continue reading

This entry was posted in General.

NOW OPEN: ERDERA Pre-Announces 2026 Call

The European Rare Disease Research Alliance (ERDERA) has pre-announced its upcoming 2026 Joint Transnational Call (JTC):


Launching on 10 December 2025, this initiative will fund multinational research collaborations aimed at improving diagnostic clarity for patients whose rare diseases remain unsolved. An information webinar for potential applicants will take place on 16 December 2025, 15:00–17:00 CET.

The call will welcome proposals under the theme:

Resolving unsolved cases in rare genetic and non-genetic diseases through variant validation and new technological approaches

Access the pre‑announcement

An informational [...]

Continue reading

This entry was posted in General.

ENGAGE: Rare Diseases and ERNs Must Remain Visible in the EU’s Future Budget

The European Commission has opened a consultation on the draft Multiannual Financial Framework (MFF) — the EU’s long-term budget plan.
In the current proposal, rare diseases are not explicitly mentioned, and the EU4Health programme no longer appears as a standalone initiative.

European Reference Networks (ERNs) — established by the European Commission in 2017 — have become a cornerstone of the EU’s strategy to improve diagnosis, treatment, and care for people living with rare and complex conditions by connecting healthcare providers and specialists across Member States. The omission of ERNs and rare [...]

Continue reading

This entry was posted in General.

READ: EU Trend Report Highlights Growth in Cross-Border Healthcare

The European Commission has published its latest Cross-Border Healthcare Trend Report (2025), revealing steady growth in the number of EU citizens accessing medical care outside their home country. Between 2021 and 2023, more than 1.3 million requests for healthcare abroad were submitted under the EU Directive on patients’ rights in cross-border healthcare, with the vast majority approved.

The report shows that Spain, Germany, France, and Czechia remain leading destinations for patients seeking timely or specialist treatments across borders. Overall, €465 million was spent on cross-border healthcare during this period — demonstrating how European [...]

Continue reading

This entry was posted in General.

ENGAGED: Lexi Breen Endo-ERN ePAG

On 9 October 2025, Endo-ERN ePAG Lexi Breen presented a poster titled “Understanding Barriers Faced by Gender Diverse People in Accessing Higher Education” at the British Association of Gender Identity Specialists (BAGIS) Symposium in Manchester, UK.


The poster explored the evolving landscape of support for gender diverse, including intersex, students and staff in higher education. It highlighted systemic barriers and called on institutions to strengthen inclusive practices and policies The BAGIS conference gathered clinicians, researchers, and advocates committed to advancing gender diversity in healthcare and education.

 

Check out the poster and

Continue reading

This entry was posted in General.

APPLY: ERDERA Networking Support Scheme (NSS) funding call

The European Rare Diseases Research Alliance (ERDERA) has a call for the Networking Support Scheme (NSS). The deadline for this round of funding is open until 7 April 2026. The aim of the NSS is to bring rare disease and the rare cancer community together across borders, disciplines and sectors.

This call will be open until April 2029 with applications being reviewed on a six-monthly basis.

To be eligible, applicants must plan a networking event with a clear rare disease or rare cancer research focus and address both aims of the call: promoting knowledge exchange and supporting [...]

Continue reading

This entry was posted in General.

NEW: Publication from EuRREB Advancing Data Harmonisation and Research in Transgender Health

EuRREB

We are pleased to share the latest publication from the European Registries for Rare Endocrine and Bone Conditions (EuRREB):
The Gender Incongruence module in EuRREB – European Registries for Rare Endocrine and Bone Conditions: first results, current insights and future directions published in Endocrine Connections.

What the study achieved

The EuRREB team has successfully developed and integrated a dedicated module for Gender Incongruence within existing European health registries.
This new module:

Standardises data collection across centres

Enhances comparability and interoperability

Supports [...]

Continue reading

This entry was posted in General.

COMPLETE: EURORDIS Rare Barometer Survey

The Rare Barometer programme gathers real experiences from people living with rare diseases across Europe, helping to turn those experiences into concrete data that can influence EU and national policies. Each new edition builds on the findings of previous surveys, showing where progress has been made — and where challenges remain.

The survey is open until 16 November 2025 and is available in more than 25 languages.Everyone affected by a rare endocrine condition — patients, parents, or carers — is encouraged to participate and share it within their community.

👉

Continue reading

This entry was posted in General.

LISTEN: ERNs on Air

The latest episode of the ERNs on Air bonus podcast series shines a spotlight on a patient-led initiative addressing inequities in endocrine medicine provision across Europe.

In this episode, host Julien Poulain hands over to Nora Lázaro (EURORDIS, ERN & Healthcare Patient Engagement Manager) for a conversation with Johan de Graaf (patient representative and co-chair of the Endo-ERN ePAG) and Emily White (Project Manager, Endo-ERN Coordination Team).

Together, they discuss how data from three Europe-wide surveys has been used to map disparities in access to essential treatments and specialist care for rare [...]

Continue reading

This entry was posted in General.

In Memoriam – Prof. Juliane Léger (1954 – 2025)

It is with great sadness that we share the news of the passing of Prof. Juliane Léger on 27 September 2025, at the age of 71.
Prof. Léger was a distinguished pediatric endocrinologist-diabetologist at Hôpital Robert-Debré (AP-HP, Paris) and an important contributor to the foundation of Endo-ERN.

Throughout her career, she made outstanding contributions to the field of pediatric endocrinology, particularly in the areas of congenital hypothyroidism, growth disorders, and rare endocrine diseases. As coordinator of the French reference centre CRESCENDO, she played a leading role in advancing care, research, and collaboration for children with rare endocrine conditions.

Prof. [...]

Continue reading

This entry was posted in General.