New study 2022

Access to COVID-19 vaccination in people with rare diseases


Global access to vaccines is a critical step in order to manage the SARS-CoV-2 pandemic. At the beginning of the pandemic outbreak, several patient organisations reported difficulties in accessing health care and vaccination, which was in an experimental phase during that period. 

Nowadays the situation has changed substantially and there are several vaccine options, but there are also new variants of the virus on the horizon. In this context, we consider that it is important to study the impact of vaccination on people living with a rare disease while the pandemic lasts.    


Collecting information on vaccination in people with rare diseases and monitoring access to vaccines, as well as studying the course of the infections and their evolution.  


The study is addressed to people with rare diseases or their caregivers, who will be asked to fill out a brief survey (it will only take up 15 minutes of your time). The data collected will be updated daily and it will be freely accessible to all participants in the study. 

Research is the heart of Share4Rare. By working together we can help to advance the research efforts in rare diseases. This is why we need you. Join the community and participate in research!

Create your Share4Rare account

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