Show Notes:
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
The National Hemophilia Foundation: Link
Hemophilia Federation of America: Link
Our Segment this month is made possible by Genentech
Connect with BloodStream Media:
Show Notes:
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
Patient informed consent article: Link
Pfizer and Sangamo’s gene therapy trial paused: Link
Connect with BloodStream Media:
Show Notes:
Presenting Sponsor: Takeda
Subscribe to BloodStream Podcast: Link
Patient informed consent article: Link
Pfizer and Sangamo’s gene therapy trial paused: Link
Connect with BloodStream Media:
Show Notes:
PRESENTING SPONSOR: Takeda
LET’S TALK SEGMENT SPONSOR: Sanofi Genzyme
SEGMENT SPONSOR: Genentech
BLOODSTREAM MEDIA: All our stuff!
RARE PATIENT VOICE: Website
LET’S TALK SEGMENT: Website
Connect with BloodStream Media:
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
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:
Find our Hosts on Social: @patrickjameslynch @boardo87
Connect with BloodStream Media:
Find all of our bleeding disorders podcasts on
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
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
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
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
Show Notes:
PRESENTING SPONSOR: Takeda
SUBSCRIBE to BloodStream on Apple Podcasts
CHECK OUT all our stuff
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
JD Supra Article - California v. Texas
Article on Shared Decision-Making
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
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
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
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://bihttps://bit.ly/3yaPj2U
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
Patrick and Amy speak to Kathy Raufi on the brink on International Thalassemia Day, get input from the Coalition for Hemophilia B on some recent news, and discuss how von willebrand factor may be key to helping treat clotting disorders, too!
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:
Cooley’s Anemia Foundation:
https://bit.ly/2RudLeX
Patients’ Stories:
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
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
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
Amy and Patrick review MASAC’s new recommendations for women with bleeding disorders, provide an important update on a recent clinical trial investigation, and discuss bullying during COVID. Then filmmaker Ryan Gielen joins to talk about his new documentary, My Beautiful Stutter, now streaming on discovery+.
Notes:
PRESENTING SPONSOR: Takeda - bit.ly/TakedaBDsite
MY BEAUTIFUL STUTTER: http://bit.ly/MBSLetMeSpeak
SUBSCRIBE to BloodStream on Apple Podcasts - bit.ly/BSPAP
CHECK OUT all our stuff: bit.ly/AllBloodStreamStuff
American Rescue Plan (ARP) info from NHF: http://bit.ly/NHFARP2021
Gene Therapy Clinical Trial Investigation: http://bit.ly/GTinvestigation2021
MASAC recommendations for women: http://bit.ly/MASACwomen
Cyberbullying in India: http://bit.ly/CyberIndia2021
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