Homozygous FH Community Gathering

An amazing group of individuals and family members affected by Homozygous FH gathered together for dinner and conversation on December 2 in the Washington, DC area. the Family Heart Foundation hosted the event, bringing together individuals from across the US with HoFH, and parents whose children have HoFH. Dr. Bart Duell of Oregon Health and Science University’s Center for Preventive Cardiology was on hand to answer questions and offer his insights about current treatment of HoFH and what is on the horizon. People shared their experience, thoughts, concerns, and worries, and had the opportunity to meet others living with the same rare disorder. For some it was the first time they had met anyone else with HoFH.

The HoFH Community program of the Family Heart Foundation works to bring together individuals and family members affected by Homozygous FH, the rare and most severe form of Familial Hypercholesterolemia. There is a monthly conference call and educational and awareness materials specific to HoFH. If you are interested in connecting with others in the HoFH Community, send an email to HoFHCommunity@theFHFoundation.org.

Leave a Reply