My daughter has rare condition called Familial Chylomironaemia Syndome (FCS). She was lucky to get early diagnose. After meeting others with FCS, I have heard so many stories about their sufferings before they finally got diagnosed. Early diagnose gave my daughter better changes to avoid serious health problems. They all deserve this change.
FEF
FH Europe Foundation Ambassador
NGO · Estonia
3
positions filed
in the 687 files tracked
1
legislative file
of 687 tracked
2
with a full position paper
attached to a submission
Counts here are a floor, never a total: they cover the 687 consultation files tracked so far (60,344 submissions, mostly 2021–26), so an organization's real filing history is larger, not smaller.
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Their record over time
FH Europe Foundation Ambassador filed 3 positions between 12 Sept 2025 and 15 Sept 2025, across 1 of the 687 legislative files tracked here, attaching a full position paper 2 times.
What they argued
Familial hypercholesterolaemia (FH) and elevated lipoprotein(a) [Lp(a)] are the most common, inherited lipid conditions in Europe. They are major drivers of premature heart attacks, strokes and other cardiovascular diseases, yet remain largely invisible to citizens and in public health strategies. Around one in 300 people live with FH and one in five with high Lp(a).
Familial hypercholesterolaemia (FH) and elevated lipoprotein(a) [Lp(a)] are the most common, inherited lipid conditions in Europe. They are major drivers of premature heart attacks, strokes and other cardiovascular diseases, yet remain largely invisible to citizens and in public health strategies. Around one in 300 people live with FH and one in five with high Lp(a).
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