22nd-29th April 2024

Rare Disease Day 2019: let’s break silos between health and social care!

The primary immunodeficiency community worldwide celebrated Rare Disease Day 2019 on the 28th February. Each year, this day is an opportunity to improve the care and quality of life of rare disease patients and their families around the world. 2019 puts the spotlight on bridging health and social care. Patients and their families require a combination of different health, social and local services in their daily life. Therefore coordination and communication between those services is of utmost importance to improve patients’ quality of life.

Such a person-centered approach to care will be at the heart of the 2019 World Primary Immunodeficiency Week (World PI Week) campaign. There are over 320 different types of primary immunodeficiencies which are estimated to affect over 6 million people worldwide. But those are all different, meaning that each individual requires a customized approach, focused on his/her specific needs. This cannot become a reality for all patients without better coordination of all the aspects of care.

Therefore: Let’s break silos between medical and social care!

Read the full statement here.

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