Rare Disease Communication: Make it or Break it

Hosted by Jill Prawer / FH Europe Foundation

7 March 2024
Worldwide

Description


Webinar: This webinar brings together patients and caregivers with the rare diseases HoFH and FCS who will talk about how information about their rare disease was communicated to them and how that has affected their response to it. They will also explore how the patient/caregiver can best communicate their diagnosis and needs to the wider world. We will hear from research psychologist Natalia Vázquez who will share evidence-based aspects of good communication in rare diseases.

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