- 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
September 2019
World Autoinflammatory Awareness Month
September, worldwide, more information
2019 CHI Family Conference
6 - 8 September 2019, Philadelphia, PA, USA more information
Aortic Dissection Awareness Day
19 September 2019, worldwide, more information
7th UIA Associations Round Table Asia-Pacific
19-20 September 2019, Pattaya, Thailand, more information
Integrated Care, a Global Approach
19-20 September, Burgos, Spain, more information
China Rare Disease Summit
20-22 September, Shenzen, China, more information
UN High Level Meeting on Universal Health Coverage
23 September, New York, USA, more information
RAREsummit19
23 September, Cambridgeshire, England, more information
Dravet Syndrome Conference 2019
26 September, Madrid, Spain, more information
October 2019
International Gaucher Day
1 October, more information
8th Annual Symposium on ATP1A3 in Disease 2019
3-4 October, Reykjavik, Iceland, more information
APARDO Symposium 2019
19-21 October, Taipei, Taiwan, more information coming soon.
November 2019
Innovation Bootcamp in Rare Diseases
4-5 November, Leuven, Belgium, more information
International Primary Immunodeficiencies Congress (IPIC) 2019
6-8 November, Madrid, Spain, more information and registrations
The 14th Meeting of the International Conference on Rare Diseases and Orphan Drugs (ICORD)
11-13 November, Rishon Lezion, Israel, more information
World Orphan Drug Congress
12-14 November, Barcelona, Spain
A limited number of free passes are available for patient organisations. More info.
10th International Prader-Willi Syndrome Organisation Conference
13-17 November, Havana, Cuba, more information
International Rare Disease Research Consortium (IRDiRC) Meeting
21-22 November, Paris, France
International conference on Quality of Life for Osteogenesis Imperfecta (OI)
22 - 25 November, Amsterdam, 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
April 2020
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
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
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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