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- What is an orphan drug?
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- List of the latest marketing authorisations and orphan medicinal products designations
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International rare disease events
January 2020
Digitalisation and infectious diseases: improving patient outcome in the age of big data
20-21 January, Basel Switzerland, more information
EB 2020 1st Global Congress on Epidermolysis Bullosa
19-23 January, London, UK, more information
February 2020
8th ACCELERATE Paediatric Oncology Conference
6-7 February 2020, Brussels, Belgium, more information
Rare Disease Film Festival
10 February, UK, more information
International Childhood Cancer Awareness Day (ICCD 2020)
18 February, worldwide, more information
XVIII International Conference on Duchenne and Becker Muscular Dystrophy
28 February - 1 March, Rome, Italy, more information
March 2020
6th RE(ACT) Congress - 4th IRDiRC Conference 2020
11-14 March, Berlin, Germany, more information
4th ISNS Middle East-North Africa Regional Meeting
8-11 March , Limassol, Cyprus
April 2020
Human Genome Meeting
05-08 April 2020, Perth Australia, more information
The European IPF Patient Summit
24-26 April 2020, Warsaw, Poland, more information
World Orphan Drug Congress
29 April - 1 May 2020, Oxon Hill, Maryland, USA, more information
May 2020
International Huntington’s Disease Awareness month
May, worldwide, more information
SIOP Europe 2020 Annual Meeting
4-8 May, Valencia, Spain, more information
EMSP 2020 Annual Conference
7-9 May 2020, Madrid, Spain, more information
Huntington's Disease Youth Organisation - 1st Young Adult Congress
9-11 May 2020, Glasgow, Scotland, more information
World Orphan Drug Congress
29 April - 1 May 2020, Oxon Hill, Maryland, USA, more information
WHO 73rd World Health Assembly
17-21 May, Geneva, Switzerland
Rare Diseases International 6th Annual Membership Meeting
19 – 20 May 2020, Geneva, Switzerland
July 2020
3rd EURO-NMD translational Research Summer School, edition 2020
6-10 July, Lieden, Netherlands, 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
November 2020
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
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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