- 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
May 2020
WHO 73rd World Health Assembly
17-21 May, Geneva, Switzerland
Rare Diseases International 6th Annual Membership Meeting
19 – 20 May 2020, Geneva, Switzerland
Conference on Women and Bleeding Disorders
29-31 May 2020, Basel, Switzerland more information Event postponed to May 2021 due to COVID-19
June 2020
2020 Annual SMA Conference
11-14 June, Orlando, Florida, USA, more information Event cancelled due to COVID-19
July 2020
3rd EURO-NMD translational Research Summer School, edition 2020
6-10 July, Lieden, Netherlands, more information Event postponed to July 2021 due to COVID-19, exact dates tbc
August 2020
World Orphan Drug Congress
24-26 August 2020, Oxon Hill, Maryland, USA, more information
46th Annual Meeting of the European Society for Blood and Marrow Transplantation
30 August – 2 September 2020, Madrid, Spain, more information
September 2020
14th International Conference on Osteogenesis Imperfecta (OI2020)
5-8 September 2020, Sheffield, UK, more information
c4c Multi-Stakeholder Meeting on Child Psychiatry
10-11 September 2020, Brussels, Belgium, more information
IAPO 9th Global Patients Congress
16-18 September 2020, Edinburgh, Scotland, more information
The ‘’3rd Pan-Asian Regional Conference on Thalassaemia & other Haemoglobinopathies’’
Dates to be confirmed, New Delhi, India more information
October 2020
7th international Symposium on NBIA & related disorders
1-3 October, Lausanne, Switzerland, more information
4th European Working Group on Gaucher Disease Congress
11 - 14 October 2020 in Leiden, The Netherlands, more information
The 2020 International Brain Tumour Awareness Week
24-31 October, worldwide, more information
34th E.S.PKU Conference 2020
29 October - 1 November, Madrid, Spain, more information
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
The ‘’15th International Conference on Thalassaemia & other Haemoglobinopathies’’ & the ‘’17th TIF Conference for Patients & Parents’’
Dates to be confirmed, Thessaloniki, Greece 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
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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