Your Tag: 2026

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.
Private-Public Collaboration Accelerator - How to Pitch to Investors - Webinar Public #1

Private-Public Collaboration Accelerator – How to Pitch to Investors

September 16 @ 11:00 am - 1:00 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 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.
Situating ethics in the research continuum

Introductory webinar: Situating ethics in the research continuum

July 24 @ 3:00 pm - 4:00 pm
This webinar will present a theoretical framework for situating ethics across research activities. The framework will then be brought to life through a relevant case study discussion, giving participants a concrete reference point for the episodes ahead.
State of the art rare disease country reports ERDERA

State of the art 2026 rare disease country report: Poland

This 2026 country report outlines the policy, research, care and support landscape for rare diseases in Poland.
NMG workshop 2026

ERDERA National Mirror Groups workshop: Creating, evolving and utilising national registries to advance rare disease research

Held in Riga on 9–10 June, the workshop brought National Mirror Group experts, researchers, clinicians and policymakers together to exchange practical lessons on how national rare disease registries can better support research and alignment across countries.
Photograph of neurons - CC BY-NC-SA 2.0 by Birth Into Being via Flickr.

NCL Foundation launches €200,000 prize to connect rare and common neurodegeneration research

The NCL Foundation has opened the Rare-to-Common Neurodegeneration Impact Prize, a €200,000 research award supporting collaborative projects that connect CLN3 Batten disease research with more common neurodegenerative or age-related disorder
EU Flags

European Commission opens call for evidence on future Joint Undertakings

Feedback is open until 14 July 2026, giving stakeholders an early opportunity to comment during the preparation of a likely legislative proposal for a Council regulation.
uropean Human Genetics Conference (ESHG) 2026

At ESHG 2026 in Gothenburg, ERDERA’s diagnostics work reviewed early progress and the next phase ahead

At the European Human Genetics Conference 2026 in Gothenburg, ERDERA’s Diagnostic Research Workstream reviewed progress, highlighted early results and used a major European genetics meeting to examine how advances in data sharing and genomic analysis may strengthen rare disease diagnosis across countries.
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