- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
International rare disease events
April 2021
Global Congenital Diaphragmatic Hernia Awareness Day
19 April, worldwide, more information
Global 2021 CDH Conference
28 - 30 April 2021, online, more information
May 2021
International Thalassaemia Day 2021
8 May 2021, worldwide, more information
5th World Conference Congenital Disorders of Glycosylation (CDG)
13 - 16 May 2021, online, more information
European Conference on the Diffusion of Genomic Medicine: Health Economics & Policy
26 - 28 May 2021, online, more information
June 2021
ALAPA, Alianza Argentina de Pacientes: PRIMER CONGRESO DE ENFERMEDADES POCO FRECUENTES LATINOAMERICANO
21 - 23 June 2021, online, more information
International Scientific CDG Symposium 2021 (Virtual)
23 -24 June 2021, online, more information
April 2022
20th International Vasculitis and ANCA Workshop
3-6 April, Dublin, Ireland, more information
July 2022
11th International Prader-Willi Syndrome Organisation Conference!
6 – 10 July 2022, University of Limerick, Ireland, more information
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative