International patient registry for rare diseases and COVID-19



Presentation of the study “The burden of COVID-19 in people affected by rare diseases” 
More info

Dear colleague,

Share4Rare and Garrahan Hospital have launched a global patient registry with the aim of studying the effects of COVID-19 in rare disease patients (including those yet undiagnosedof all ages.  

webinar will take place on Friday September 4th to present this registry, where everybody will be able to meet the coordinators of the project and the medical team involved. The webinar will also feature experts on rare diseases, both paediatric and adult, and the patients' associations who have collaborated in the design and development of the study. 

Are there any reported cases of COVID-19 within your patients' organization?

Would you like to help us improve the general knowledge on the effects of COVID-19 on the rare disease community?


See you at the webinar!

Friday, September 4th 2020.
12:00 pm (New York time zone, UTC-4)
18:00 pm (Barcelona time zone, UTC+2)

  • Share4Rare: collaborative research on rare diseases 
  • COVID-19 and rare diseases 
  • The role of patients' associations in Share4Rare
  • Questions & Answers 
  • Dr. Marcelo Andrade (Sant Joan de Déu Barcelona Children's Hospital)
  • Dr. Guillermo Chantada (Sant Joan de Déu Barcelona Children's Hospital and Garrahan Hospital Buenos Aires)
  • Begonya Nafria (Coordinator of Share4Rare)
Join the webinar!

The event will be recorded and published at a later stage on our YouTube channel.

You will receive an e-mail with a unique link to join the session the day before the event.

Altre date

  • 4 Settembre 2020 18:00 - 20:00

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