about_us_10.14

Who Are We?

The Familial Hypercholesterolemia (FH) Foundation is a patient-centric nonprofit organization. We are exclusively dedicated to raising awareness of all forms of Familial Hypercholesterolemia (FH) through education, advocacy, and research. Our mission is to increase the rate of diagnosis and encourage proactive treatment of this life-threatening disease.

The FH Foundation is the result of the team effort of patients and healthcare practitioners who have joined their knowledge and passion for helping others in changing the status quo for FH. We are honored to have key FH opinion leaders, both from the US and international arena, sharing their expertise and research insight with the FH Foundation. Our success is rooted in collaboration, innovation, and commitment. With the help of a dedicated group of physicians and nurse practitioners, professional organizations, governmental representatives, and volunteers, The FH Foundation takes pride in its forward-thinking and versatile approach to making a real change in the world of FH.

Mission

The FH Foundation is a patient-centered nonprofit organization dedicated to education, advocacy, and research of Familial Hypercholesterolemia (FH). Our mission is to raise awareness and save lives by increasing the rate of early diagnosis and encouraging proactive treatment. If left untreated, FH leads to aggressive and premature heart disease in women, men and children of all racial and ethnic backgrounds.

How Can We Help?

The FH Foundation launched its website in 2012, providing reliable information on the reality of FH. We have a Facebook, Twitter and LinkedIn account, where people can interact with us directly. To people who register, we send quarterly newsletters as well as breaking news updates. We publish news articles and blog posts on our home page and we also reply to inquiries on an individual basis, providing support for our members.

In 2013, the FH Foundation started some ambitious long-term projects in the FH realm. 

We launched an FH Advocates for Awareness program. The idea behind it is to empower people with FH to speak up about their journey with this disorder, not only to their close ones, but to medical professionals and media outlets as well. This program is run in conjunction with a grand rounds series where health practitioners are paired up with patients to present lectures on FH from both perspectives. Advocates receive training, which enhances their public speaking capabilities and gives them the tools they need to advocate in their local community.

Another big event for us in 2013 is the inaugural Familial Hypercholesterolemia Summit: Awareness to Action. Taking place on September 18th and 19thin Annapolis, MD, the FH Summit will convene stakeholders from all realms – FH specialists and scholars (both national and international), governmental representatives, professional and patient organizations, patient advocates, payers, and industry. The major goals of this event are to collaborate in identifying best practices in diagnosis and treatment of FH, improve cascade screening efforts, support national patient registries, and impact public health policy. We will be publishing a proceedings paper with action items and recommendations generated at the Summit. 

Our major initiative this year is the FH Foundation’s nationwide CASCADE FH™ Registry. We have hired the Duke Clinical Research Institute (the largest academic clinical research organization in the world!) to build and operationalize the registry. This will be the only active FH registry in the US. All data collected and research thereof will be IRB-approved. It is based on a hybrid model, combining clinician- and patient-entered data. We are extremely excited (and proud!) to manage this huge undertaking, something we feel is much needed in the FH community.

Due to interest in our organization from different continents, we are also translating our educational materials in various languages, including Spanish, Portuguese, Italian, German, Mandarin, Russian, French, and Lebanese. We hope to reach not only people who are already diagnosed with FH, but those who may be at risk of having it.