Welcome to The FH Foundation
The mission of The FH Foundation is to raise awareness of FH (familial hypercholesterolemia) through education, advocacy, and research. Our goal is to save lives by increasing the rate of early diagnosis and encouraging proactive treatment. If left untreated, this life-threatening genetic disorder leads to aggressive cardiovascular disease in men, women, and children.
Familial Hypercholesterolemia Registry
- Facilitate interest in FH research
- Allow for greater participation of patients in clinical studies
- Gather natural history of patients in a cost-effective manner
- Patient- and physician-entered data
If you care for patients with FH, we ask you to encourage them to join The FH Foundation. It is FREE and includes a Welcome package, quarterly newsletter and breaking news announcements (e.g. clinical trials, newly approved drugs, etc). They will also benefit from joining a community of individuals affected by FH, and will have the opportunity to share their stories and experiences with this condition.
The FH Foundation is the only nonprofit organization in the United States dedicated entirely to serving individuals with FH. We collaborate with healthcare professionals, the public health sector and corporations to advance understanding, recognition and treatment options for FH.
The FH Foundation is currently working to create the first comprehensive National FH Registry. Funding for the registry has come from the private sector. All registry data will be de-identified, and physicians and researchers around the world will benefit from open access to it. We are hopeful that this will speed the discovery of new treatments for FH. Patient-entered data will help you delve into the natural history of FH and may give you insight into the emotional and psychological issues associated with living with this chronic disease.
In addition to the FH registry, we ultimately hope to have a tissue/blood repository, which would be housed at the Coriell Institute for Medical Research – part of the NIH.
Finally, we encourage you to speak about FH to your colleagues and invite them to Register with The FH Foundation. You can also download our comprehensive PowerPoint presentation on FH here (preview 4 out of 49 slides below).
Thank you for your interest and support! Your participation is invaluable to the FH Foundation and FH community.
Please find a list of useful resources here.
You can contact us with further questions or concerns at firstname.lastname@example.org