A year after her daughter Havilah was diagnosed with CDKL5 deficiency disorder (CDD), Whitney Mitchell’s pediatrician looked her in the eyes and said something that Whitney still carries with her…
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Growing up, Priscilla Veneklause watched as her father struggled to manage his rare genetic disorder: adrenoleukodystrophy (ALD). Unfortunately, her father lost his fight with ALD when Priscilla was still…
The latest statistics on heart disease and its effect on Black communities are startling. According to an article in the Dallas Examiner, Black people are fifty to seventy percent more…
Each week, in an email to his team, Albireo Pharma CEO Ron Cooper sends out the story of a child or family affected by conditions such as PFIC or Alagille…
Wendy Borsari is not just a patient living with hypertrophic cardiomyopathy (HCM); she is also a mother, a fierce advocate, and part of the patient advocacy team at Tenaya Therapeutics,…
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