- 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
April 2019
Wolf-Hirschhorn Syndrome Awareness Day
16 April, more information
Undiagnosed Children's Day 2019
26 April, more information
CIOMS Open Meeting on Patient Involvement in Development and Safe Use of Medicines
30 April, Geneva, Switzerland more information
May 2019
ICHOM Conference 2019 - Redefining value through patient centered outcomes
2-3 May, Rotterdam, The Netherlands, more information
International Thalassaemia Day 2019
8 May, more information
RE(ACT) Congress 2019
8-10 May, Toronto, Canada, more information
CORD Conference – A Rare International Dialogue
10-12 May 2019, Toronto, Canada, more information
SIOP Europe 2019 Annual Meeting
20-25 May, Prague, more information
Universal Health Coverage: Including Rare Diseases to leave no one behind
23 May, Geneva, Switzerland, more information
Tenth International Thyroid Awareness Week
25-31 May 2019, more information
June 2019
Gaucher Regional Meeting-Together Towards Improvement of Diagnosis, Treatment and Management
7-9 June, Struga, North Macedonia, more information
Regional Meeting on Rare Diseases Macedonia
7-9 June, Struga, North Macedonia, more information
See, Hear, Smile - Topical Meeting on Osteogenesis Imperfecta
14-15 June, Riga, Latvia, more information
NORD Summit – Living Rare, Living Stronger
21-23 June, Houston, USA, more information
July 2019
7th Annual International ECD Medical Symposium
11 July, Milan, Italy, more information
7th Annual International Patient & Family Gathering
12 July, Milan, Italy, more information.
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