To address Familial Hypercholesterolemia as a public health issue, the FH Foundation convened our first FH Global Summit. We brought together researchers and clinicians in the field of FH from every continent (except Antarctica!). In addition, we were joined by leaders from the CDC, the National Heart Lung and Blood Institute and the most important stakeholder group - FH patients!
For those of us in the United States, the three most important takeaways were:
Lack of awareness and in depth understanding of FH!
Most genetic conditions have a specific diagnosis code, but FH does not. This discourages accurate diagnosis and contributes to making FH invisible. FH is vastly underestimated in terms of prevalence and severity by most medical practitioners.
FH is invisible and research is dramatically underfunded!
Most policy makers have never heard of FH even though it is significantly more common than Type 1 Diabetes and Cystic Fibrosis.
There is a lack of data about FH in the United States!
In order to address these and other issues, we need more data about the prevalence and burden of FH in the US.
Your voice and your experience of living with FH are key to bringing about change! Become part of this important movement by joining the CASCADE FH Registry™.
At the beginning of 2014, we will be publishing a condensed version of the FH Summit online. We will also be publishing a call to action paper in a peer reviewed medical journal. More on that soon!
