The Perspectives and Recommendations from the Rare Disease Community’

Raquel Castro, Erwan Berjonneau and Sandra Courbier from Eurordis have published an editorial piece on the International Journal of Integrated Care entitled:

‘Learning from the Pandemic to Improve Care for Vulnerable Communities: The Perspectives and Recommendations from the Rare Disease Community’.

This editorial touches upon the situation of people living with a rare disease during the pandemic, our recommendations for holistic integrated care, and our community’s perspectives on virtual care.

They have used the figures and testimonials from the Rare Barometer surveys as well as the recommendations of the Holistic Care position paper.  When they first attended an IFIC event in 2016, rare diseases were barely on their radar and they were the only patient representatives in the room! Since then, they have collaborated with the experts regularly, on both their activities.

read the article