In this episode, Jonathan James interviews Maxwell Hunter who is a quality assurance expert in plasma collection. He shares about current therapies available, technology changes, and product safety. 

Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. 

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In this episode, we talk about the history of the Hemophilia community and the many transitions of treatment and therapy through the last 30 years in the United States. Trish Underland's background as a nurse care coordinator at the Hemophilia & Bleeding Disorders Treatment Center at Johns Hopkins HTC shares her experiences of working with patients to improve outcomes. Trish provides an excellent perspective on the important role that plasma-derived products and PK studies play for people with bleeding disorders and the vital role patients play in choosing their products and working together as a team with their providers.

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When most people are diagnosed with a rare disease like Hemophilia it is common to experience fear of the unknown, but when that diagnosis happens overseas in a foreign country with doctors and nurses who don't speak your language the uncertainty is insurmountable. In this episode, Jonathan James interviews Brittnee Vasil who was living overseas with her husband while deployed in the Navy and experienced the most frightening time of her life. She shares her story and how she overcame such insurmountable odds all while keeping her faith.   

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Your personal information is protected by The Health Insurance Portability and Accountability Act of 1996 (HIPAA). 

In this podcast, our host Jonathan James does a deep dive with Greg Webb, HIPAA compliance officer and in-house counsel for Hope Charities, on how to protect your personal health information and what things you would consider when you share your information with others. 

Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. 

Audio versions of this podcast are available on Spotify, Apple, and anywhere you listen to podcasts. Subscribe to our podcast to listen to more inspiring interviews like this today. 

Spotify:
https://open.spotify.com/show/7mHb8FnlHmOz0PBcv6kQ8p?si=hlBA_VPsTmaJTbOmkQyvNg

Apple:
https://podcasts.apple.com/us/podcast/hope-charities/id1613823273

iHeart:
https://www.iheart.com/podcast/269-hope-charities-93979933/

#chronicillness
#bleedingdisorders 
#youarenotalone
#hemophilia 
#mentalhealth
#suicide
#suicideprevention
#advocate
#healthcare

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“Financial Assistance Legislative Challenges”

In Episode 6 Jonathan James and James Romano have an important discussion about many of the legislative challenges facing people who need financial assistance while living with a rare or chronic disease like Hemophilia. James talks about the copayment accumulator, third party payments and many other issues that directly impact the financial assistance people are able to receive when living with a rare disease. James is the executive director for United for Charitable Assistance Coalition and the Hope Charities legislative consultant. You can learn more about the important work UCA is doing at www.unitedforcharitableassistance.org.

Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. 

Audio versions of this podcast are available on Spotify, Apple, and anywhere you listen to podcasts. Subscribe to our podcast to listen to more inspiring interviews like this today. 

Spotify:

https://open.spotify.com/show/7mHb8FnlHmOz0PBcv6kQ8p?si=hlBA_VPsTmaJTbOmkQyvNg

Apple:

https://podcasts.apple.com/us/podcast/hope-charities/id1613823273

iHeart:

https://www.iheart.com/podcast/269-hope-charities-93979933/

#chronicillness

#bleedingdisorders 

#youarenotalone

#hemophilia 

#financialassistance 

#suicide

#advocate

#healthcare

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Living with Hemophilia is no easy road and the unsung heroes of anyone living with a rare or chronic condition are the family that surrounds them. Hannah James joins her Dad Jonathan James in an unplugged interview to talk about growing up as a daughter of someone living with hemophilia. In this episode, we cover important issues like a Child's perspective of watching their Dad struggle at times with the limitations of hemophilia and other topics like what it’s like growing up being involved in the bleeding disorders community. 

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There is no better way to connect with family or friends than to spend time enjoying food with one another. In this episode, Jonathan James and Brad Creel talk with Food Network host and world-renowned author and food expert Simon Majumdar to discuss the important ways that food brings happiness, community, and health to our lives. 

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In Episode 3 Jonathan James and Lori Bienvenu, LPC sit down with suicide survivor Emma Benoit to have an important conversation about #MentalHealth and suicide prevention. Emma shares her story of surviving a suicide attempt and her undiagnosed depression and anxiety and the lessons she learned on her journey. Emma shares her story in the documentary “My Ascension” and speaks to students and adults about the important role of mental health and how to be aware of the warning signs. You can learn more about the movie at www.myascension.us. 

Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. 

Audio versions of this podcast are available on Spotify, Apple, and anywhere you listen to podcasts. Subscribe to our podcast to listen to

more inspiring interviews like this today. 

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In episode two of the Hope Charities Podcast, Jonathan and Stephen sit down and talk about many of the aspects of living with a bleeding disorder from the perspective of the patient. In addition they talk about what that looks like on preventative treatment. 

You really don't want to miss out on this episode of our podcast so we hope you tune in, take notes and remember, as they say, " You are not alone."

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In episode one of the Hope Charities podcast, Jonathan James (CEO) invites Lesley Lamarie to discuss some aspects of prophylaxis and life for the hemophilia and bleeding disorder community.  

Make sure to tune in and don't forget to register for Prophy Conference March 10-12, 2022. Registration is still open so don't miss out!

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