• EP36: Rare and Relevant TL;DR and an Update on ”Take Care of Maya”

  • 2023/11/21
  • 再生時間: 26 分
  • ポッドキャスト

EP36: Rare and Relevant TL;DR and an Update on ”Take Care of Maya”

  • サマリー

  • 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

    https://www.appliedclinicaltrialsonline.com/view/going-the-distance-insights-into-rare-disease-clinical-studies-trial-retention-patient-experience?utm_source=sfmc&utm_medium=email&utm_campaign=mktg_ebook

    Global Genes Resources Guide

    https://globalgenes.org/know-your-family-history/?utm_campaign=Nov-QNL&utm_medium=email&_hsmi=282849305&_hsenc=p2ANqtz--IM7dHCwVZkl2UEhckEJR3jg3xyfXGcqzphukDkbgeTF6X4EKnt9WX9qPFT6AHF8qg9sWiThjLTSR7fvipPAzwGc6sKA&utm_source=hubspot

    HIV+Hepatitis Policy Institute Press Release

    https://hivhep.org/wp-content/uploads/2023/02/HIV-Hep-DLC-DPAC-Litigation-Amicus-Briefs-press-release-2.10.23.pdf

    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/

    ---

    Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host us on LinkedIn as well at Dazzle4Rare.

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あらすじ・解説

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

https://www.appliedclinicaltrialsonline.com/view/going-the-distance-insights-into-rare-disease-clinical-studies-trial-retention-patient-experience?utm_source=sfmc&utm_medium=email&utm_campaign=mktg_ebook

Global Genes Resources Guide

https://globalgenes.org/know-your-family-history/?utm_campaign=Nov-QNL&utm_medium=email&_hsmi=282849305&_hsenc=p2ANqtz--IM7dHCwVZkl2UEhckEJR3jg3xyfXGcqzphukDkbgeTF6X4EKnt9WX9qPFT6AHF8qg9sWiThjLTSR7fvipPAzwGc6sKA&utm_source=hubspot

HIV+Hepatitis Policy Institute Press Release

https://hivhep.org/wp-content/uploads/2023/02/HIV-Hep-DLC-DPAC-Litigation-Amicus-Briefs-press-release-2.10.23.pdf

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/

---

Don't miss an episode of Signalise! Be sure to ✔️FOLLOW or ✔️SUBSCRIBE via your podcast app of choice. You can also follow #Signalise news on @Dazzle4Rare on Facebook , Instagram , and Twitter. You can find host us on LinkedIn as well at Dazzle4Rare.

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