- 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
October 2019
International Gaucher Day
1 October, more information
8th Annual Symposium on ATP1A3 in Disease 2019
3-4 October, Reykjavik, Iceland, more information
World MCT8-AHDS Day
8 October, worldwide, 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
Congress: Different faces of Dravet syndrome
7-9 November, Zagreb, Croatia, more information
DISORDER: The Rare Disease Film Festival
9-10 November, San Francisco, USA, more information
The 14th Meeting of the International Conference on Rare Diseases and Orphan Drugs (ICORD)
11-13 November, Rishon Lezion, Israel, more information
EPF Congress
12-14 November, Brussels, Belgium, more information
World Orphan Drug Congress
12-14 November, Barcelona, Spain
A limited number of free passes are available for patient organisations. More info.
WAGR Awareness Day
13 November, worldwide
IAPO's Asia-Pacific Patients Congress
13-14 November, Taipei, Taiwan (Republic of China), more information
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
Skin appendages: Developmental and patophysiological aspects
22 November, Paris, France, more information
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
February 2020
Rare Disease Film Festival
10 February, UK, more information
March 2020
6th RE(ACT) Congress - 4th IRDiRC Conference 2020
11-14 March, Berlin, Germany, 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
International Huntington’s Disease Awareness month
May, worldwide, 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
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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