Elisa Mora
Elisa Mora
Project Manager

#S4RMonth activity: Caring for caregivers and patients in pandemic times

Webinar Àngels Ponce  12F
New study!

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

Family therapist Àngels Ponce, a specialist in childhood and disability, will host a Share4Rare virtual session in which she will share resources and strategies to fight the effects of confinement in the best possible way.

As you may already know, throughout the February we are celebrating #S4RMonth, an extensive calendar of educational and sharing activities framed in the commemoration of Rare Disease Day, which takes place every year on the last day of February.

We will dedicate the second week of the month to the registry of patients with COVID-19 and rare diseases. The current global pandemic situation has imposed exceptional situations as a routine, including home confinement. This measure has had a great impact on mental health, especially in the community of people affected by rare diseases and their caregivers since they belong to a risk group and it is still unknown how the infection by SARS-CoV- 2 might affect them. In this group of people, confinement has been more strict and permanent for almost a year now.

On February 12th at 6:00 p.m. CEST, we invite you to a virtual session with Àngels Ponce, where the following topics will be addressed:

  • Learning to recognize how we feel after so many months of pandemic.
  • Being able to identify which are the risk factors that can lead to stress.
  • Being able to identify what resources we have to take care of our physical and emotional health in order to offer quality care.

During the session, questions that may arise will be collected and discussed.

Would you like to participate? Please register in this form.

And remember, if you have had COVID-19, you are affected by a rare disease and you would like to participate in a collaborative research project, you can register here.

Sign up for Share4Rare!

Related diseases
COVID-19
Topics
Disease management
Mental health
Psychosocial support
Share4Rare