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Rare Disease Report

Hosted by HCPLive editors, the monthly series tackles the intricate details of the 6,000-plus known rare diseases, featuring an expert guest, one disease at a time.

Rare Disease Report Podcast: CDKL5 Deficiency Disorder

August 31, 2022

In the first episode of a 2-part Rare Disease Report, Whitney Mitchell, mother and caregiver to her 5 year old daughter Havilah, shared her experience leading up to, and now living with, Havilah’s CDKL5 deficiency disorder diagnosis.

The Rare Disease Report Podcast: Myelodysplastic Syndromes & Acute Myeloid Leukemia

June 03, 2022

Expert Dr. Mikkael Sekeres treats patients with bone marrow diseases and in this episode he talks about treatment methods, clinical trial obstacles and the importance of reliable sources when it comes to rare conditions like MDS and AML.

The Rare Disease Report Podcast: TANGO2

April 28, 2022

This episode features a conversation with Dr. Amelle Shillington and Jacob and Ashley Wiley after Shillington diagnosed the extremely rare genetic disease that's afflicted Aislynn Wiley, and only 69 other documented cases worldwide.