- 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
March 2019
International Childhood Cancer Awareness Day (ICCD 2019)
6 March, Brussels, Belgium, more information
International Symposium on Xeroderma Pigmentosum and other Nucleotide Excision Repair Disorders
20 - 22 March, Cambridge, England, more information
24th Congress of the EAHP
27-29 March, Barcelona, Spain, more information
April 2019
World Orphan Drug Congress USA 2019
10-12 April, Maryland, USA, more information
May 2019
ICHOM Conference 2019 - Redefining value through patient centered outcomes
2-3 May, Rotterdam, The Netherlands, more information
SIOP Europe 2019 Annual Meeting
20-25 May, Prague, more information
Tenth International Thyroid Awareness Week
25-31 May 2019 more information
June 2019
See, Hear, Smile - Topical Meeting on Osteogenesis Imperfecta
14-15 June, Riga, Latvia, more information
July 2019
4th World Conference on Congenital Disorders of Glycosylation (CDG)
26 - 27 July, Lisbon, Portugal, more information.
Cornelia de Lange syndrome World conference
31 July - 03 August 2019, Bad Neuenahr-Ahrweiler, Germany, more information
August 2019
Cornelia de Lange syndrome World conference
31 July - 03 August 2019, Bad Neuenahr-Ahrweiler, Germany, more information
November 2019
International Primary Immunodeficiencies Congress (IPIC) 2019
6-8 November, Madrid, Spain, more information and registrations
10th International Prader-Willi Syndrome Organisation Conference
13-17 November, Havana, Cuba, more information
December 2019
Patient Solidarity Day 2019
7 December, more information
January 2020
EB 2020 1st Global Congress on Epidermolysis Bullosa
19-23 January, London, UK, 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