Aina Crosas Soler
Aina Crosas
Communications technician at FSJD

International Congress on the Effects of COVID-19 on People with Rare Diseases

International Congress banners
New study!

A registry to investigate how COVID-19 affects people with rare diseases

New Share4Rare event! On the second week of November, an international conference will take place virtually in order to present the patient registry of COVID-19 and rare diseases and to discuss diverse topics of interest related to the current pandemic. Do not miss it!

The International Congress on the Effects of COVID-19 on People with Rare Diseases will be held on November 9-11th 2020 and it is organized by the Sant Joan de Déu Barcelona Children's Hospital (Barcelona), the Sant Joan de Déu Foundation, the Garrahan Hospital and its Foundation (Buenos Aires) and two Argentinian patient organizations, ALAPA and FADEPOF.

The congress arises from the recent creation of the international registry of patients with rare diseases and COVID-19, which aims to improve the current knowledge of the effects of this new infectious disease in rare disease patients. The initiative is fostered by Share4Rare, aimed at connecting and educating families affected by rare diseases, as well as promoting collaborative research through the sharing of clinical information from relatives and patients.

The congress is addressed both at the scientific community and at patients and families, and will tackle different topics related to the current pandemic: study of new vaccines, psychosocial impact, consequences of the disease, access to treatments, healthcare models, etc.

The event will be held online on 3 different days. There will be simultaneous translation into English of those sessions in Spanish. Here you will find the detailed program of the sessions and in this link you can register in those that interest you the most (there are 9 sessions, 3 per day):

Dates:          

  • November 9th         4:00 p.m. – 7:00 p.m. (Barcelona time)

                                       12:00 a.m. – 3:00 p.m. (Argentina time)

  • November 11th       4:00 p.m. – 7:00 p.m. (Barcelona time)

                                       12:00 a.m. – 3:00 p.m. (Argentina time)

  • November 13th       4:00 p.m. – 7:00 p.m. (Barcelona time)

                                       12:00 a.m. – 3:00 p.m. (Argentina time)

Related diseases
COVID-19
Topics
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Disease management
Mental health
Patient advocacy
Research
Share4Rare
Socio-economic policies
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