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- What is an orphan drug?
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- Role of EURORDIS
- Patient advocates involvement
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- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
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- News & Events
International rare disease events
April 2020
Human Genome Meeting
05-08 April 2020, Perth, Australia, more information In-person event cancelled because of COVID-19, this event will now be held online
c4c Multi-Stakeholder Meeting on Child Psychiatry
16-17 April 2020, Brussels, Belgium, more information Event tentatively postponed to 10-11 September 2020 due to COVID-19
IAPO 9th Global Patients Congress
16-18 April 2020, Edinburgh, Scotland, more information Postponed due to COVID-19, date tbc
The European IPF Patient Summit
24-26 April 2020, Warsaw, Poland, more information Postponed due to COVID-19, date tbc
2020 Congenital Hyperinsulinism International Family Conference
24-26 April 2020, Fort Worth, Texas, USA, more information In-person event cancelled because of COVID-19, options for online event currently under consideration
May 2020
International Huntington’s Disease Awareness month
May, worldwide, more information
SIOP Europe 2020 Annual Meeting
4-8 May, Valencia, Spain, more information Postponed due to COVID-19, dates tbc
Wishbone Day (community awareness effort ever for osteogenesis imperfecta (OI)
6 May, worldwide, more information
EMSP 2020 Annual Conference
7-9 May 2020, Madrid, Spain, more information Postponed to November 2020 due to COVID-19, dates tbc
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
June 2020
2020 Annual SMA Conference
11-14 June, Orlando, Florida, USA, more information
July 2020
3rd EURO-NMD translational Research Summer School, edition 2020
6-10 July, Lieden, Netherlands, more information
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
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
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