Tag: Patient Advocacy

One year of ERDERA: the European alliance built to accelerate rare disease research reports first results

24 February 2026

28 February, across Europe and beyond: one year into delivery, ERDERA is advancing towards shorten diagnostic journeys and improved therapies for people living with a rare disease.

EURORDIS Black Pearl Awards 2026: celebrating rare disease champions in Brussels and online

16 February 2026

On 24 February, in Brussels and online, EURORDIS will bring the rare disease community together for its fifteenth Black Pearl Awards ceremony, held in the lead‑up to Rare Disease Day.

ICH opens consultation on draft E22 guidance for patient preference studies

13 February 2026

A draft ICH E22 guideline on patient preference studies is now open for public comment via the European Medicines Agency until 12 April 2026.

EURORDIS Black Pearl Awards 2026

1 February 2026

Annual awards celebrating outstanding achievements by people living with a rare disease and those making a difference across the rare disease community (patient advocacy, policy, science, care, industry and beyond).

IRDiRC launches call for experts for four new rare disease activities

26 January 2026

Rare disease researchers, clinicians, patient advocates and data experts are invited to help shape four new IRDiRC activities linked to the new IRDiRC Roadmap, with applications closing on 20 February 2026.

World Orphan Drug Congress USA 2026

5 December 2025

More than 280 speakers from industry, regulators, patient organisations, investors and healthcare providers, and aims to showcase new science, technologies and policies that can accelerate orphan drug development and improve access to therapies for people living with rare conditions.

Unity in action: Rare Disease Day 2026 campaign launches with a renewed focus on equity

20 November 2025

A global movement, coordinated by EURORDIS in partnership with 72 national alliances, amplifying representation and accelerate fair access to diagnosis, care and research.

ERDERA Open Session: science and advocacy align to advance rare disease research and care

30 October 2025

Amsterdam and online, convening clinicians, scientists and advocates to share progress and the power of patient led policy to improve diagnosis and care.