- 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
October 2021
5th CMT awareness campaign
1 October 2021, worldwide, more information
Living with SMA: Spotlight on the policy and access environment in Europe
5 October 2021, online, more information
International Usher Info Scientific Symposium and Patient Symposium
6 - 9 October 2021, online, more information
World MCT8-AHDS Day
8 October 2021, worldwide, more information
Global NCBRS Awareness Day
9 October 2021, worldwide, more information
DIAGNOSED BUT NOT TREATED? PRIORITIZING TIMELY CARE IN EUROPE’S CANCER PLANS
13 October 2021, online, more information
EAMDA International Conference on Neuromuscular disorders
15-16 October 2021, online, more information
NORD Rare Summit (virtual)
18 - 19 October 2021, online, more information
Journée internationale du syndrome Phelan-mcdermid
22 October 2021, worldwide, more information
EPF Congress 2021
26 - 29 October 2021, online, more information
15th International Brain Tumour Awareness Week
30 October - 6 November 2021, worldwide, more information
November 2021
World Orphan Drug Congress Europe
15 - 18 November 2021, Sitges, Spain, more information
1st International Conference on Rare Diseases and Paediatric Research
18 - 19 November 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