Familial Hypercholesterolemia Foundation
Familial Hypercholesterolemia Foundation
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About this organization
Mission
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. If left untreated, FH leads to progressive heart disease and early heart attacks in men, women, and children of all racial and ethnic backgrounds. OUR MISSION : Raise Awareness. Save Lives.
About
CASCADE FH Registry - To address gaps in FH diagnosis and treatment, in 2013, the FH Foundation launched and now maintains a national FH patient registry. The Cascade Screening for Awareness and Detection of Familial Hypercholesterolemia (CASCADE FH Registry) collects comprehensive longitudinal data on individuals with confirmed or suspected FH. The CASCADE FH Registry serves as a key instrument to support health service planning, increase knowledge on the disease, and pool data for epidemiological, clinical and outcomes research, as well as for therapy effectiveness. The CASCADE FH Registry employs an innovative hybrid design to maximize data collection: (A) data is collected from partnering clinical sites, and (B) patients can directly enter their data via a user-friendly patient portal hosted on the FH Foundation website. This dual-pathway enrollment design maximizes outreach and provides both the clinical and patient perspective. Data entered through both methods are secure and can be accessed through queries. Data includes baseline and follow-up information on demographics, laboratory values, treatment, and clinical events.
Interesting data from their 2020 990 filing
The purpose of the non-profit, as set forth in the filing, is “The familial hypercholesterolemia foundation ("the fh foundation") was incorporated february 17, 2012 as a california nonprofit corporation. the fh foundation is a patient-centered nonprofit dedicated to education, advocacy, and research of familial hypercholesterolemia (fh). the 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.”.
When discussing its purpose, they were characterized as: “The fh foundation is a patient-centered nonprofit organization dedicated to research,”.
- The state in which the non-profit is legally authorized to operate is CA, as reported.
- The filing confirms that the non-profit's address in 2020 was 680 E Colorado Blvd No 180, Pasadena, CA, 91101.
- The form of the non-profit reports 16 employees as of 2020.
- Is not a private foundation.
- Expenses are greater than $1,000,000.
- Revenue is greater than $1,000,000.
- Revenue less expenses is -$1,552,991.
- The organization has 9 independent voting members.
- The organization was formed in 2012.
- The organization pays $1,873,673 in salary, compensation, and benefits to its employees.
- The organization pays $393,097 in fundraising expenses.
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