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Your Tag: Patient Advocacy

ECRD 2026

ECRD 2026 in Prague strengthens the push for a coordinated EU Action Plan on rare diseases

On 3–4 June, EURORDIS–Rare Diseases Europe and Orphanet convened the rare disease community at ECRD 2026 in Prague around a shared call for coordinated European action, including the forthcoming European Blueprint for Rare Diseases.
2nd ERDERA Training for Young Advocates for RD Open Call

Young rare disease advocates strengthen their role in research at ERDERA training in Paris

Young advocates met in Paris from 23–25 April 2026 for the second ERDERA Training for Young Advocates for Rare Diseases, focused on advocacy, clinical research, patient rights and partnership in paediatric rare disease research.
Bojana Mirosavljevic

ERDERA interview with Bojana Mirosavljevic, rare disease patient advocate from Serbia and founder and president of Život/Life.

A rare disease patient advocate reflects on Zoya’s Law, early diagnosis, and why patients are a crucial stakeholder in research, policy, and national rare disease systems.
Rare Disease Day 2026 visual representation

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

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.
Black Pearl Awards

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

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.
European Medicines Agency (EMA)

ICH opens consultation on draft E22 guidance for patient preference studies

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

EURORDIS Black Pearl Awards 2026

February 24 @ 6:30 pm - 11:00 pm
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).
Task-Forces-IRDiRC

IRDiRC launches call for experts for four new rare disease activities

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

World Orphan Drug Congress USA 2026

June 9 - June 22
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.
Rare Disease Day 2026 banner

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

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