International rare disease events

April 2022

Online Lecture Ylva Söderfeldt: How Patient Organizations Shaped Modern Medicine

21 April 2022, online, more information

International Primary Immunodeficiencies Congress

27 - 29 April 2022, Portugal, more information

Undiagnosed Day

29 April 2022, online, more information


May 2022

International Thalassaemia Day

8 May 2022, online, more information

International Day of Porphyria patients

18 May 2022, worldwide, more information

Webinar - Clinical trials: A Patient's Perspective

20 May 2022, online, more information

RDI Informal Side Event to the World Health Assembly "NETWORKING EXPERTS, CENTERS OF EXPERTISE AND PATIENT ORGANIZATIONS TO STRENGTHEN HEALTH SYSTEMS FOR RARE DISEASES"

24 May 2022, online, more information

Special Policy Webinar for the European Week Against Cancer

31 May 2022, online, more information


June 2022

Annual Meeting of the Brain Tumor Group of SIOP Europe (SIOPE-BTG) in Hamburg, Germany

1 – 12 June 2022, Hamburg, Germany, more information

First World Congress on Rare Skin Diseases

7 - 9 June 2022, Paris, France, more information

International Batten Disease Awareness Day

9 June 2022, more information

International conference on Ectodermal Dysplasias

9 - 11 June 2022, Paris, France, more information

20th International Symposium on Pediatric Neurooncology (ISPNO 2022)

11-15 June 2022, Hamburg, Germany, more information

HTAi 2022 Annual Meeting 

25 - 29 June 2022, Utrecht, Netherlands and online, more information


July 2022

3rd International XLH Symposium

1 July 2022, Dublin, Ireland, more information

11th International Prader-Willi Syndrome Organisation Conference!

6 – 10 July 2022, University of Limerick, Ireland, more information


August 2022

PRISMS 2022 International Conference

4-6 August 2022, Dallas, Texas, USA, more information

September 2022

International Congress on Porphyrins and Porphyrias (ICPP) 

4 - 7 September 2022, Sofia, Bulgaria, more information

6th CUTIS LAXA DAYS

14 - 16 September 2022, Ghent, Belgium, more information

Rare neurotransmitter diseases: from novel research to focused treatments through iNTD network strengthening and patient empowerment

29 September -1 October 2022, Hotel M, Belgrade, Serbia and online, more information
 


October 2022

Innovation Bootcamp in Rare Diseases (IBRD)

11 October 2022, Brussels, Belgium, more information

3rd SMA scientific congress

21-23 October 2022, Barcelona, Spain, more information

16th International Brain Tumour Awareness Week

29 October 2022 - 5 November 2022, worldwide, more information


November 2022

3rd International Muscle-Bone Interaction in Duchenne Muscular Dystrophy Symposium

3 November and 14 November 2022, online, more information

Page created: 03/12/2009
Page last updated: 17/05/2022
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases