International rare disease events

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


23 September, Cambridgeshire, England, more information

October 2019

International Gaucher Day

1 October, 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

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


Page created: 03/12/2009
Page last updated: 05/07/2019
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect 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.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day 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 initiativeEuropean Conference on Rare Diseases