While there are existing therapies for individuals living with homozygous familial hypercholesterolemia (HoFH), a rare form of high LDL cholesterol, these therapies often fail to control cholesterol levels for…
CureDuchenne, the nation’s leading nonprofit dedicated to funding a cure for Duchenne muscular dystrophy (DMD) and a Patient Worthy partner, held its first “Napa in Newport” event in 2015;…
The Mississippi State University (MSU) Bulldogs joined forces with Children’s of Mississippi, the state’s only children’s hospital with statewide pediatric clinics, to honor pediatrics patients throughout Mississippi, sharing and uplifting…
The American Academy of Dermatology (AAD) held its Annual Meeting from March 17-21, 2023. During the meeting, stakeholders from the dermatology community connected to discuss clinical practices, research trends, and…
Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…
Jamas and Margot LaFreniere started the Sophie's Hope Foundation in 2020 shortly after Sophie, their daughter, was diagnosed with a rare disease: glycogen storage disease type 1B (GSD1B). The mission…
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