About FH Europe Foundation
FH Europe Foundation is a network organisation that supports 4 hyperlipidaemias, Familial Hypercholesterolaemia (FH), raised Lp(a), Homozygous Familial Hypercholesterolaemia (HoFH) and Familial Chylomicronaemia Syndrome (FCS). HoFH and FCS are both rare. The Foundation acts in the area of advocacy and patient support, drives public health policy improvements and collaborates progressively with leading European and the EU institutions – like the European Commission, the European Parliament and many other EU stakeholders. Over the past 3 years, FH Europe has grown its Network and secured a leading place in the European public health policy space responding to the unmet needs of patients and people affected with inherited lipid conditions.
For Rare Disease Day we are running a social media campaign throughout February and are holding a webinar on a topic specifically directed to rare disease patients: Rare Disease Communication: Make it or Break it open 7th March 6pm CET. The webinar will bring together patients and caregivers with HoFH and FCS who will talk about how information about their rare disease was communicated to them and their response, and 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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