Today is Rare Disease Day!

No Comments

Today, the FH Foundation recognizes those living with homozygous familial hypercholesterolemia (HoFH) and those we have lost too soon to this devastating disorder. While FH is common, HoFH is rare, affecting 1 in 160,000 people worldwide with significantly accelerated heart disease.

The outlook for someone diagnosed with HoFH today is much better than it used to be. But we have a long way to go.


Why does Avery care about Rare Disease Day?

She is 7 years old and living with Homozygous FH, a rare form of familial hypercholesterolemia. Watch her video here:

We owe a debt of gratitude to those with HoFH who have participated in research that contributes to the development of effective treatments for millions who are at risk for heart disease. Their participation has made a difference for many!

Our global FH community has lost good friends to HoFH. We remember them often and in their memory, we fix our sights on a hopeful future with effective and early treatment of FH.

Please join us in recognizing our rare HoFH Community and donate to the FH Foundation to support our work addressing the gaps in care for those at the front lines of the fight against early and aggressive heart disease.

For Rare Disease Day and Heart Month, Max’s mom asked him some questions about his experience having HoFH. Thanks Max!
rdd-logo-small - edit JoinHoFHCommunity RoadtoDC

On the Road to DC!

FH Foundation Advocates for Awareness are headed to Washington, DC to join the rare disease community for Rare Disease Week. FH Advocates will attend Rare Disease Day at NIH, the Rare Disease Legislative Advocates Conference, and to share their HoFH stories with legislators on Lobby Day.

 donate today 

Thank you for helping the HoFH Community

AegerionLogoGenzyme 
  

Leave a Reply