Determining the safest, best, and most effective therapeutic options for patients is crucial to improving outcomes and ensuring optimal health. As shared in a story from MD Edge, researchers…
As our understanding of genetics continues to grow, new gene variants are being identified and linked to the development of various diseases. According to Medical XPress, a research team from…
Unfortunately, the prognosis associated with glioblastoma is poor; some studies suggest that survival rates are 40% within one year of diagnosis and 17% within two years, with less than 7%…
Waldenstrom macroglobulinemia (WM) is defined as a B-cell lymphoplasmacytic lymphoma. Data from patients in Latin America on WM are scarce. Researchers are hoping to fill the void by analyzing…
Before you read on, don't forget to check out Part 1 of our interview. In Part 1, Wendy discusses what hypertrophic cardiomyopathy (HCM) is, her rare variant, the diagnostic journey, and her…
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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