Your Tag: 2026

Irish Presidency of the EU in 2026

Why Rare Diseases Matter for Europe’s Future Embedding Research and Innovation as Standard of Care in Rare Disease

October 2 @ 10:00 am - 5:15 pm
On 13 November 2026 in Dublin, Ireland, this event will explore how research, innovation, patient partnership and EU policy can improve rare disease care and strengthen Europe’s life sciences ecosystem.
Ana Rath at ERDERA GAM 2025

“By handling data in a structured and responsible way, we can build a shared European ecosystem”

Ana Rath, Data Services Co-Lead in ERDERA, explains how the consortium is helping researchers and data holders make rare disease data more findable, interoperable and reusable while protecting privacy and keeping data holders in control.
European Medicines Agency (EMA)

EMA launches a new pilot to advance innovative methods to animal testing

The voluntary data submission framework allows developers to share data generated using New Approach Methodologies outside marketing authorisation applications and receive tailored, non-binding feedback from European regulatory experts.
Journée nationale FrBioNet

ERDERA connects rare disease research and biobanking at FrBioNet’s first national event

ERDERA contributed to the first Journée nationale FrBioNet, bringing a European rare disease perspective to discussions with the French biobanking community.
ERDERA - World Orphan Drug Congress - JVDPhotography-40

Can AI deliver for rare diseases? ERDERA brings the debate to WODC Europe

ERDERA will return to the World Orphan Drug Congress Europe with a booth and an interactive pre-conference workshop examining where artificial intelligence can support rare disease research and therapeutic development, and where human expertise remains essential.
ERDERA trainings template (7)

Public-Private Collaboration Accelerator – How to Pitch to Investors

September 16 @ 11:00 am - 12:30 pm
A webinar offering practical guidance on how to pitch to investors, aimed at researchers, clinicians, academics and SMEs working on rare disease projects.
ERDERA - GAM day 2 - JVDPhotography-65

ERDERA announces its 2026 Open Session

This free online session will highlight patient and research perspectives, innovative clinical study methods, and emerging regulatory approaches
Scientist reading a journal article 2026

Longitudinal progression, metrics, age-dependence, and modifiers of ataxia severity in SCA27B: a multicentre study of 219 patients

The multicentre observational study analysed 661 assessments from 219 people with SCA27B to examine disease progression, clinical outcome metrics and demographic or genetic modifiers.
Conference "Advancement of Treatments for Rare Diseases" in Cyprus, June 2026

Cyprus conference connects European research priorities with the path to rare disease treatments

At the “Advancement of Treatments for Rare Diseases” conference in Nicosia, European and national policymakers joined clinicians, researchers, regulators, industry representatives and patient advocates to examine how stronger coordination can translate scientific progress into better prevention, diagnosis, treatment and access to care for people living with rare diseases.
ERDERA trainings template

ERDERA launches Ethics & Regulatory webinar series with introductory webinar on ethics across the research continuum

ERDERA’s ethics and regulatory experts are launching a dedicated webinar series to help the rare disease research community navigate two fast-moving areas of biomedical research: Advanced Therapy Medicinal Products (ATMPs) and Artificial Intelligence.
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