- 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
November 2020
THE INTERNATIONAL SYNGAP1 CONFERENCE AND FDA PFDD SYNGAP1: Patient Voices
19 November 2020, Rockville, Maryland, USA, more information
EMSP 2020 Annual Conference
20-21 November 2020, Madrid, Spain, more information
The International Netherton Conference
26-27 November, Rotterdam, Netherlands, more information
RAREfest20 Virtual: Interactive science, technology & arts festival
28 November, online, more information
Duchenne Patient Academy
30 November – 6 December, online, more information
The ‘’15th International Conference on Thalassaemia & other Haemoglobinopathies’’ & the ‘’17th TIF Conference for Patients & Parents’’
Dates to be confirmed, Thessaloniki, Greece more information
December 2020
Virtual Congenital Hyperinsulinism International conference
5-6 December, online, more information
European Neurofibromatosis Meeting 2020
10-12 December, Rotterdam, The Netherlands, more information
Duchenne Patient Academy (DPA)
December 2020, Athens, more information
January 2021
IRDiRC Conference and RE(ACT) Congress 2021
13-15 January 2021, online, more information
February 2021
Rare Disease Day
28 February, worldwide, more information
March 2021
The ‘’3rd Pan –Middle East Conference on Haemoglobinopathies’’
Dates to be confirmed, United Arab Emirates more information
Huntington's Disease Youth Organisation - 1st Young Adult Congress
12 - 14 March 2021, Glasgow, Scotland, more information
25th Anniversary Congress of the EAHP – “Hospital Pharmacy 5.0 - the future of patient care“
24 - 26 March 2021, Vienna, Austria, more information
April 2022
20th International Vasculitis and ANCA Workshop
3-6 April, Dublin, 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