BloodStream

James Maple, sitting in for Amy, and Patrick present the audio from BloodStream’s Diversity, Equity, and Inclusivity panel during National Hemophilia Foundation’s Bleeding Disorders Conference as well as the latest from the Let’s Talk mental health segment. Plus, news from ICER on gene therapy!   Show Notes: Subscribe: The BloodStream Podcast   Article: Hemophilia gene therapies from BioMarin, CSL pick up an early ICER endorsement    Presenting Sponsor: - Takeda, visit bleedingdisorders.com to learn more.   Episode and Segment Sponsors: - CSL Behring, visit HemEvolution.com to learn more about gene therapy, or ProtraitsofProgress.com for a virtual photo exhibition chronicling hemophilia’s history - Sanofi, visit ShareYourWhy.com to meet the CoRe team and hear stories from the hemophilia community. - Pfizer, if you have sickle cell disease, how often do painful crises have you visiting the doctor? Learn more at ClinicalTrialSCD.com    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

BloodStream welcomes back frequents collaborators, Cazandra Campos-Macdonald & Laurence Woollard. Caz shares an emotional update on her chronic pain and mental health, while Laurence tells us about the impressive recent episode of Global Hemophilia Report featuring women with bleeding disorders.    Show Notes: Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.   Subscribe to BloodStream Podcast Listen to the latest from BloodStream’s FLOW podcast Listen to the Pain Podcast Brought to you in party by Genentech #Genentech #hemophiliacommunity #BleedingDisorders #Hemophilia #HemophiliaA #Healthcare   Brought to you in part by CSL Behring. To learn more, check out www.HemEvolution.com    If you have sickle cell disease, how often do painful crises have you visiting the doctor? Pfizer is now enrolling a research study of an investigational medicine that may help to prevent pain crises caused by sickle cell disease. If you have seen a healthcare provider for 2 to 10 sickle cell crises in the past year, you may be able to participate. To speak with the study team, visit ClinicalTrialSCD.com. With your help, we can pursue new treatment options for sickle cell disease. Learn more at ClinicalTrialSCD.com or click the link in the show notes. Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Amy and Patrick are joined by Believe Limited colleague and new BloodStream Podcast correspondent James Maple! Plus, Let’s Talk is back  with a segment of suffering that features interviews with community members Dwayne Whitis and Heather Hogan, and a follow-up interview with Dr. Hanny Al-Samkari on the 2nd most common bleeding disorder that you don’t know about! Presenting Sponsor: Takeda (bleedingdisorders.com) Show Notes: Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.   Learn more about HHT   Subscribe to BloodStream Podcast Listen to the latest from BloodStream’s FLOW podcast   Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. Let’s Talk shares tips on how to care for your own or someone you love’s mental health and strives to eliminate the stigma associated with this discussion within the bleeding disorders community. Visit Letstalkmh.com and click Resources.   Brought to you by Sanofi Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter  Subscribe to The Final Summit Podcast

There is a women’s movement a brewin’ and Patrick & Amy have the scoop! Special guest Ashley Gregory is here to tell us all about it! Plus, Amy has a diagnosis of her own to talk about, and Jessica brings us back to The Well for a segment on growth featuring community member, Michelle Conde.   Presenting Sponsor: Takeda (bleedingdisorders.com) Episode Advertiser: CSL Behring (portraitsofprogress.com)   Learn more about FAIR! Contact ashley.gregory@hemofoundation.org. Show Notes: Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more. Subscribe to BloodStream Podcast Listen to the latest from BloodStream’s FLOW podcast To learn more about FAIR, Females Are Important to be Recognized, contact Ashley Gregory. The Bloodstream Podcast is also brought to you in part by a new campaign from CSL Behring called Portraits of Progress. To learn more, check out www.PortraitsofProgress.com    Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

BloodStream welcomes Greig Blamey, a physiotherapist from Winnipeg, Canada and the lead investigator and author of Sexual Issues in People with Haemophilia: Awareness and Strategies for Overcoming Communication Barriers (A fantastic interview!). Plus, Patrick learned something at his recent HTC visit and the latest Let’s Talk mental health segment, featuring Joshua Sterling Bragg, on growing, evolving, and taking baby steps.   Show Notes:   Subscribe to BloodStream Podcast   Sexual Issues in People with Haemophilia: Awareness and Strategies for Overcoming Communication Barriers: Click HERE   Listen in to Let’s Talk, a monthly segment with your host, Josh Bragg. Let’s Talk shares tips on how to care for your own or someone you love’s mental health and strives to eliminate the stigma associated with this discussion within the bleeding disorders community. Visit Letstalkmh.com and click Resources.   Brought to you by Sanofi   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Comedy writer Dru Johnston and mountaineer Chris Bombardier join Patrick and Amy for a discussion about the Making of The Final Summit, BloodStream Media’s podcast exploring what it means to chase a dream, achieve a dream, and realize then that the work has only just begun. We’ll also discuss the Celebration of Life for Val Bias and hemophilia A gene therapy approval for Europe. Show Notes:   Subscribe to BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Patrick is joined by dynamic duo, Dr. Kevin Kuo and Dr. Hanny Al-Samkari who share more about Alpha and Beta Thalassemia, a sister blood disorder to hemophilia. Plus, we’ll get an update on Patrick’s chronic pain & Amy’s writing as well as a brand new Let’s Talk segment on aging and changing.    Show Notes: Let’s Talk is brought to you by Sanofi Metal Heath Educational Resources  Visit Shareyourwhy.com to meet the Sanofi CoRe team and hear from them and members of the community about their story and passion for the hemophilia community.   Portraits of Progress   Subscribe to BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Patrick and Amy are joined by three of the most prolific and committed rare disease podcasters out there: Effie Parks from Once Upon A Gene, Kyle Bryant from Two Disabled Dudes, and Bo Bigelow from Stronger Every Day. Those three titans behind the mic join us for a candid discussion about patient centricity, we touch on some recent news, FLOW’s Jessica Lauren Richmond is back with the latest installment of The Well.   Show Notes: Subscribe to: Once Upon a Gene 2DD Stronger Everyday   Recent novel therapy news:   CSL Behring gene therapy makes comeback after hold for FDA priority review   BioMarin delays planned FDA filing for hemophilia gene therapy   FDA Grants Breakthrough Therapy Designation to BIVV001 for Hemophilia A Treatment   Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.   The Bloodstream Podcast is brought to you in part by a new campaign from CSL Behring called Portraits of Progress. To learn more, check out www.PortraitsofProgress.com    Subscribe to BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter

Women with mild hemophilia, vWD, and gene therapy were topics of discussion at The World Federation of Hemophilia’s World Congress that took place earlier this month in Montreal, Canada and Patrick and Amy were there! Hear about it as well as planning for the summer and our latest Let’s Talk mental health segment led by Believe Limited’s Joshua Sterling Bragg on loss.   Show Notes: Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.   The Bloodstream Podcast is brought to you in part by a new educational gene therapy resource from CSL Behring called HemEvolution.  To learn more, check out www.HemEvolution.com   Subscribe to BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Patrick and Amy hosted a LIVE Journey to Joint Health panel at HFA with eight blood brothers who shared their experience participating in the HFA led physical fitness challenge and now you can listen in! You’ll also hear from HFA CEO Sharon Myers and Board Chair Allie Ritcey, and we’ll cap today’s episode off with our second installment of The Well, a holistic wellness segment led by FLOW podcast host Jessica Lauren Richmond. Show Notes:   HFA Symposium 2022   Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more.   Segment Sponsored by Genentech: Visit https://www.hemlibra.com to learn more.   Subscribe to BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter