- 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
June 2019
See, Hear, Smile - Topical Meeting on Osteogenesis Imperfecta
14-15 June, Riga, Latvia, more information
Journée Mondiale de Lutte Contre la Drépanocytose
19 June, more information
NORD Summit – Living Rare, Living Stronger
21-23 June, Houston, USA, more information
Dravet Syndrome Awareness Day
23 June, 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
September 2019
World Autoinflammatory Awareness Month
September, worldwide, more information
2019 CHI Family Conference
6 - 8 September 2019, Philadelphia, PA, USA more information
7th UIA Associations Round Table Asia-Pacific
19-20 September 2019, Pattaya, Thailand, 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