Please note there are audio issues with this episode. I'll be working to upload an improved version later on release date.
In this, Kimberly shares a range of awareness events including International Epilepsy Awareness Day and World Pneumonia Day. A reminder for listeners that events like Bio-IT World Europe event are coming up and can be found on the Events Calendar. Be sure to check out conferences and events ahead of time so you don't miss out on tickets or early-bird discounts.
Also, for those interested in industry and clinical trials specifically, an e-book from Applied Clinical Trials has been published focusing on the challenges and opportunities in rare disease clinical research. She also summaries a significant lawsuit against the U.S. Department of Health and Human Services and provides a bittersweet update on the Netflix documentary "Take Care of Maya," shedding light on the unique struggles of rare disease families and providing care for sick children.
Finally, Kimberly touches on the story of Derya and it's paralells to Maya Kowalski's story. Themes such as forced hospitalization and navigating the healthcare system with a sick child are touched on so listener discretion is advised. ---
Johns Hopkins Medical page on pneumonia https://www.hopkinsmedicine.org/health/conditions-and-diseases/pneumonia
Going the Distance: Insights into Rare Disease Clinical Studies, Trial Retention & Patient Experience
Global Genes Resources Guide
HIV+Hepatitis Policy Institute Press Release
Affordable Care Act Information
https://www.healthcare.gov/where-can-i-read-the-affordable-care-act
Take Care of Maya on Netflix
https://www.netflix.com/gb/title/81349305
[New York Times article on Take Care of Maya
https://www.nytimes.com/2023/11/10/us/take-care-of-maya-trial-damages-kowalski.html
Derya's Story
http://www.freederya.info/deryas-story/
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