Hemophilia patient advocate and Haement Creative Director Luke Pembroke returns to BloodStream to discuss his gene therapy clinical trial experience and Mel Forrest, writer and host of The Pain Podcast joins to share her chronic pain learnings from Season 3 (out now!) as well as some of her journey in storytelling.    Show Notes: PRESENTING SPONSOR: Takeda - bleedingdisorders.com SUBSCRIBE: BloodStream Podcast on Apple Podcasts CHECK OUT: All BloodStream Stuff FIND OUR HOSTS ON SOCIAL: @patrickjameslynch @boardo87   Episode Notes: THE PAIN PODCAST: Season 3 - Now Live! LUKE PEMBROKE: Twitter, Instagram   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

BloodStream

Luke Pembroke gene therapy clinical trial catchup + pain and storytelling w/ Mel Forrest

Amy and Patrick discuss how growing up with a chronic illness can lead to feeling “less than,” highlight recent articles on mild hemophilia and women in the community, and present the latest installment of Let’s Talk mental health with Joshua Sterling Bragg, featuring Dr. Emily Wheat.   Show Notes: PRESENTING SPONSOR: Takeda LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme SEGMENT SPONSOR: Genentech BLOODSTREAM MEDIA: CHECK OUT all our stuff   LINKS FROM THIS EPISODE: Females Account for 1 in 5 Mild Hemophilia Cases at US Centers Syrians Claim First Case of Girl With Both Hemophilia A and C   Find our Hosts on Social: @patrickjameslynch @boardo87   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter  Check out Believe Limited’s Other Work: BloodFeed: bloodfeed.com Bombardier Blood: bombardierblood.com Hemophilia: The Musical: breakingthroughhemophilia.com My Beautiful Stutter: mybeautifulstutter.com/ Stop The Bleeding!: stbhemo.com Teen Impact Awards: teenimpactawards.com The Science Fair: thesciencefair.org

Does chronic illness lead to feeling “less than?”

During last month’s Bleeding Disorders Conference, Believe Limited’s Science Fair  hosted a session that provided a brief overview of the state of science in bleeding disorders, featuring NHF CEO Len Valentino alongside hematologists and researchers Dr. Robert Sidonio and Dr. Jonathan Roberts. Audio provided courtesy of the National Hemophilia Foundation.   Show Notes: PRESENTING SPONSOR: Takeda SCIENCE FAIR SPONSOR: Spark Therapeutics Register for NHF's State of the Science Research Summit NHF Education on Rare Bleeding Disorders Emicizumab PUPs and Nuwiq ITI Study VISIT The Science Fair SUBSCRIBE to BloodStream on Apple Podcasts CHECK OUT all our stuff

Hematologists weigh in on the state of science in bleeding disorders

Patrick and Amy are back LIVE bringing you the best of BloodStream at BDC! Listen in as they cycle through nine patient and caregiver guests catching a glimpse of those “hallway conversations” we all miss. Show Notes: ​​PRESENTING SPONSOR: Takeda  EPISODE SPONSOR: MyFactorFam.com SUBSCRIBE to BloodStream on Apple Podcasts CHECK OUT all our stuff

Best of BloodStream @ BDC 2021

Patrick and guest co-host Mel Forrest welcome on members of National Hemophilia Foundation's staff to preview the community's biggest annual meeting of the year.  Show Notes: PRESENTING SPONSOR: Takeda  EPISODE SPONSOR: MyFactorFam.com REGISTER for BDC: https://bit.ly/3jT9SdJ CHECK out BDC Interactive program: https://bit.ly/3iJEcIJ LISTEN to The Pain Podcast SUBSCRIBE to BloodStream on Apple Podcasts CHECK out all our stuff  

BDC Preview Party w/ NHF Staff

Patrick and Amy are LIVE and joined by Alex Abreu Boria to chat about next month's Bleeding Disorders Conference, Emily Wheat to discuss the role of a clinical psychologist in the treatment center, Joshua Sterling Bragg with the latest Let's Talk mental health segment, and Max Feinstein shares his brand new song, "Dear Anxious."    Show Notes:   PRESENTING SPONSOR: Takeda  SUBSCRIBE to BloodStream on Apple Podcasts CHECK OUT all our stuff     

BloodStream LIVE - HTC Psychologist Emily Wheat and new music from Max Feinstein

 Patrick and Amy catchup during the Lynch family’s east coast tour and discuss recent articles on California v Texas, shared decision making models, and safety related to AAV gene therapy. Show Notes:   PRESENTING SPONSOR: Takeda  CONNECT with Genentech SUBSCRIBE to BloodStream on Apple Podcasts CHECK OUT all our stuff NEW BloodStream Media Website JD Supra Article - California v. Texas Article on Shared Decision-Making Gene Therapy Article  

Baby on Tour, Shared Decision Making + the ACA is here to stay!

Patrick and Amy are LIVE and discuss some unfortunate lunchtime mishaps and new studies on coffee before Josh leads the latest Let's Talk mental health segment and Patrick leads a talk with Sean and Kyle, hosts of the Two Disabled Dudes Podcast.   Notes: Presenting Sponsor: TAKEDA - bit.ly/TakedaBDsite Let’s Talk Segment Sponsor: SANOFI GENZYME - http://bit.ly/LetsTalkMHBSP CHECK OUT Two Disabled Dudes Podcast: https://bit.ly/3cPcM0z READ The Health Benefits of Coffee: https://nyti.ms/3gGrl7J CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP

Howlin' Rays, coffee's the new vitamins, and Two Disabled Dudes!

Patrick and Amy welcome on rare disease patient, advocate, and podcaster Avantika Shrivastava to hear her perspective on rare disease care and management in India. Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff     

“A life such as this teaches you a lot” w/ Avantika Shrivastava

Patrick and Amy are live, in-studio, for the first BloodStream LIVE of the year!  Join the hosts and a variety of special guests for segments on patient education, the return of in-person patient meetings, asking for help, and so much more- including an announcement about a major rare disease podcast joining BloodStream Media!   Notes: Presenting Sponsor: TAKEDA - bit.ly/TakedaBDsite Let’s Talk Segment Sponsor: SANOFI GENZYME - http://bit.ly/LetsTalkMHBSP   CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP SUBSCRIBE to Once Upon A Gene Podcast: bit.ly/OUAGspot   SUBMIT to the BIG BLOODY TALENT SHOW: bit.ly/BigBloodyTalentShow SIGNUP for our FIRST-EVER NEWSLETTER: bit.ly/NewslettterSignups 

BloodStream LIVE is BACK! - Concerns in Hemophilia & Asking for Help

Patrick and Amy catch up on some recent community news then speak with leukemia survivor and bone marrow transplant recipient Bob Falkenberg as he’s set to kick off his 10th Lifeblood cycling ride to support Be The Match.   Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff   BloodStream LIVE May 26th - Event link: http://bit.ly/BloodStreamIsBack   Bob’s Team Lifeblood: http://bit.ly/TeamLifeblood2021b NHF’s Community Voices in Research: http://bit.ly/CVRNHF CSL and uniQure close agreement: http://bit.ly/CSLuni Experimental SubQ Inhibitor Treatment: http://bit.ly/SubQinhib 

First patient dosed with SubQ inhibitor treatment + guest Bob Falkenberg

PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff   International Thalassemia Day #ITD2021   To learn more about iron overload, treatments, comorbidities with Thalassemia, and more, visit:   Thalassemia Foundation of Canada: https://bit.ly/33zlLOB   Cooley’s Anemia Foundation: https://bit.ly/2RudLeX   Patients’ Stories: https://bit.ly/2SvzLqe 

“You don’t have a bleeding disorder, do you?”

Patrick and Amy are joined by Julie Kim, President of the Plasma-Derived Therapies Business Unit for Takeda, to discuss Takeda’s 5-year commitment to the WFH Humanitarian Aid Program. Then later in the show they’re joined by frequent contributor Alexa Abreu and her sister Juliemar - a former Teen Impact Honoree - to discuss the uncelebrated accomplishments of our youth and what supporting young people should actually look like.   Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   SUBSCRIBE to BloodStream on Apple Podcasts: bit.ly/BSPAP CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff   NOMINATIONS for the Teen Impact Awards: http://bit.ly/TIA2021bsp TAKEDA joins WFH’s Humanitarian Aid Program: bit.ly/WFHTakeda2021 

Donated medicine and what’s “youth empowerment” mean, really?

Patrick and Amy are joined by FLOW Podcast host Jessica Lauren Richmond to discuss assessing women’s health holistically and by Ruby Ball Foundation founder Ijeoma Azubuko to hear the harrowing story that led to her foundation’s innovative work. We also debut our new Let’s Talk mental health segment, featuring key moments from and expert insights into the Believe Limited documentary by the same name profiling mental health challenges in the bleeding disorders community. Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme - http://bit.ly/LetsTalkMHBSP   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff   FLOW Podcast: http://bit.ly/FLOWpod Ruby Ball Foundation: http://bit.ly/RubyBallIG Silent Podcast: http://bit.ly/SilentPodcastRBF 

New mental health segment + listening to women w/ Jessica Lauren Richmond & Ijeoma Azubuko

Amy and Patrick speak with students at Brown University who’ve been working with Save One Life in honor of World Hemophilia Day, and USP7 Foundation Chairman Bo Bigelow joins to discuss important news in the USP7 world on the heels of Hao-Fountain Syndrome Awareness Day.    Notes: PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite   SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP CHECK OUT all our stuff:  bit.ly/AllBloodStreamStuff   Breaking Through: https://bit.ly/3smEGpN Teen Impact Awards: https://bit.ly/2Q9zXue   Help Save One Life: https://bit.ly/3elfs6f   Stronger Every Day Podcast: https://bit.ly/3tmui2v USP7 Foundation: https://bit.ly/2Q6oEmH DISORDER Rare Disease Film Festival: https://bit.ly/3gcv7qK 

Remembering Adam, World Hemophilia Day + USP7’s Bo Bigelow

A monthly, 360-degree look at the bleeding disorders community, complete with news, interviews, and informed opinionating. Hosted by Patrick James Lynch. Produced by Believe Limited.

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BloodStream

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