April 2013


The FH Foundation Updates: Spring 2013

Dear FH Foundation member,

 

As an organization dedicated exclusively to serving those affected by Familial Hypercholesterolemia, we understand the sense of urgency and the need for action. 

 

Here is an update on some of The FH Foundation's continuous efforts to genuinely raise awareness of Familial Hypercholesterolemia and help those who have FH.

 

 

 FH Advocates for Awareness Program

The FH Advocates for Awareness Program is tailored to educate and empower individuals with FH. It is just one of the ways in which we are building community. We are also providing the necessary tools to transform patients into advocates for themselves and their families.

 

We're happy to announce that the first Speaker Training session for Advocates will take place in sunny Amelia Island, FL, in June 2013.
 
We welcome more applications! If you or a loved one has FH and you're interested in community outreach and public speaking opportunities, please apply here.

 



First International Familial Hypercholesterolemia Summit 
The FH Foundation is proud to be hosting the first International FH Summit on September 19th, 2013 in Annapolis, MD. 

This event will convene key thought leaders from the medical field, governmental representatives, and, of course, patients and others stakeholders to address gaps in diagnosis and care of FH.



Launching the National FH Registry
Perhaps the most ambitious and significant initiative of 2013 is The FH Foundation's launch of the first of its kind National Familial Hypercholesterolemia Registry in the USA.
 
The CASCADE FH Registry will be a way to study the scientific realities of FH as well as explore the burden of living with it through the patient's perspective. It will enable advancement in research, diagnosis and treatment of FH.



Revamping our website www.theFHfoundation.org

We're not going to give away too much, but let's just say that The FH Foundation website will have a fresh new look and will provide additional resources, such as FH clinical trial listings, a lipid specialist search engine, more information on treatment options for Homozygous Familial Hypercholesterolemia, and so much more. 


Share your ideas with us! Tell us how we're doing at
 
Warm wishes,

The FH Foundation
office: (626) 465-1234



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