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BloodStream

BloodStream is an entertaining and informational podcast for the bleeding disorders community. Each week, hemophilia patient Patrick James Lynch and former non-profit director Amy Board are joined by advocacy leaders, medical experts, and other guests to discuss the latest news, scientific advancements, policy initiatives, and so much more. Subscribe wherever you listen, or search BloodStream Podcast on YouTube to catch every episode there. Produced by Believe Limited. Presenting sponsor: Takeda.
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Now displaying: Page 3
Apr 22, 2022
Patrick and Amy are LIVE from HFA Symposium! Listen in to keynote speaker, Adar Cohen, as he shares how the strength of our communities relies on our willingness and our ability to have the big, complicated conversations in our work, in our families, and in our civic lives.We’ll also have a new Let’s Talk segment with Josh Bragg. A great episode about those “big conversations” we often avoid.

Show Notes:

Learn more about Adar Cohen!

HFA Symposium 2022

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

Subscribe to BloodStream Podcast

 

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Apr 15, 2022
In this mini episode, Patrick and Amy run through Believe & BloodStream presence at the Hemophilia Federation of America’s Symposium before speaking about some major April anniversaries and introducing the new season of BloodStream Media’s Pain Podcast! Show Notes:

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

Subscribe to BloodStream Podcast

HFA Symposium 2022

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Apr 8, 2022
Patrick spends time with advocacy leader and patient, Brian O’Mahony, about issues facing the community in Ireland and his updates on his experience as a person with hemophilia who’s been dosed with gene therapy. Amy speaks with Dr. Ben Samelson-Jones about the use of Twitter in hemophilia and we have a new segment! Listen in for the debut of a brand new monthly segment, The Well, featuring Jessica Lauren Richmond of BloodStream’s FLOW podcast.

Show Notes:

Article from Hemophilia News Today: Ankle Joint Damage in Hemophilia Common, But Not Linked to Pain

 

Digital haemophilia: Insights into the use of social media for haemophilia care, research and advocacy

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

Subscribe to BloodStream Podcast

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Mar 25, 2022
Patrick and Amy welcome news producer and thalassemia advocate Nina Maria Baldalamenti to the show as well as blood brother and frequent flier of BloodStream, Luke Pembroke, who reveals he’s on the brink of leaving for, dare we say, an adventure of a lifetime (!!). They also discuss the recent MASAC meeting (Medical and Scientific Advisory Council of NHF), present the latest Let’s Talk mental health segment with Josh Bragg and play clips on novel therapies from the latest episode of Global Hemophilia Report.

 

Show Notes:

Presenting Sponsor: Takeda.

Visit bleedingdisorders.com to learn more.

 

Let’s Talk Sponsor: Sanofi.

Visit LetsTalkMH.com for mental health resources

Subscribe to BloodStream Podcast

Global Hemophilia Report - new episode!

Haemcast Podcast w/ Luke Pembroke and PJL!

Max Feinstein on 2DD Podcast

MASAC Information

Learn more about Thalassemia!

Catch up on previous segments of Let’s Talk!

 

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Mar 11, 2022
Hear from Kristin Eilenberg of EE Minds about their state-of-the-art programs designed for parents who have children with medical conditions. With courses such as “I Am The Parent, Your New Normal, and Empowerment” and “Rules of the Road and Meaningful Consequences”, EE Minds is changing the way parents parent. Plus, HFA is back and a chat with Josh Bragg! A great episode!

Show Notes:

Subscribe to BloodStream Podcast

Energizing & Empowering Minds

Living Beyond The Diagnosis

Testimonials

Program Overview

Learn and register for a program

Register for HFA Symposium 

Joint Damage Seen in Hem A Patients With Milder Disease, Few Bleeds

Connect with BloodStream Media:

BloodStreamMedia.com

Feb 25, 2022
It’s Rare Disease Day so we’re honoring our caretakers with a special interview with Brendan Hayes, a hemophilia mom who has had the opportunity to work with other rare disease groups as a national advocate. We’ve got another Let’s Talk segment featuring Josh Bragg’s journey to finding joy. A feel good, can’t miss episode!  Show Notes: Explore Rare Disease Day and Share Your Colors!

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

Check Out Season One of Let’s Talk, a segment devoted to mental health in the bleeding disorder community. 

Let’s Talk - a film by Believe Limited, made possisble by Sanofi

Find Resources at Mental Health Matters Too

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Feb 11, 2022
Patrick and Amy welcome new FLOW co-host and lady bleeder, Sarah Watson AND community member, Jim Mueller, who shares some cool ideas about financial planning. We’ll also introduce our new podcast The Global Hemophilia Report with Dr. Donna DiMichele. 

Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

Co-pay Accumulator Policies Hurt Patients. There’s a Simple Solution: Link

HR5801 - The Help Ensure Lower Patient Copays Act: Link

The Global Hemophilia Report: Link

Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia A and caregivers of children ages 1-17 years old with hemophilia A (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at GJP@tribecacom.com.

Tribeca Communications: recruiting people who are 18 years and older with moderate to severe hemophilia B and caregivers of children ages 1-17 years old with hemophilia B (without active inhibitors) to be part of a market research survey. If you are interested in participating, please email George Poulakos at gjp@tribecacom.com.

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Jan 28, 2022
Dr. Guy Young is here to break down the latest data out of the BioMarin gene therapy clinical trial. We get a new Let’s Talk segment featuring Josh Bragg AND Patrick reveals a big secret. Don’t miss it! Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

BioMarin plans return to FDA with updated data on hemophilia gene therapy (BioPharmaDive): Link

BioMarin's hemophilia A gene therapy hits goal in phase 3, teeing up FDA filing despite durability doubts (Fierce Biotech): Link

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Jan 21, 2022
On December 30th, 2021, longtime bleeding disorders and HIV/AIDS advocate and former National Hemophilia Foundation CEO Val Bias passed away suddenly at age 63. This special episode features audio from numerous interviews that Val gave to BloodStream Media and Believe Limited across the years; it’s Val’s life, in Val’s own words, set alongside personal reflections from hosts Amy Board and Patrick James Lynch.  Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

 

Buffalo New Obituary 

Val Bias, 63, crusader for better care for those with hemophilia and HIV/AIDS: LINK

World Federation of Hemophilia

WFH VP Medical Glenn Pierce pays tribute to Val Bias: LINK

National Hemophilia Foundation

NHF Mourns the Loss of Longtime CEO, Val Bias: LINK

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Jan 14, 2022

We hear from Save One Life and the World Federation of Hemophilia on what to expect in 2022, as well as some gene therapy trial updates. Patrick and Amy speak about the loss of Val Bias and preview a special episode honoring his life. 

Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Dec 24, 2021
What’s the end of the year without Top Ten lists? Patrick and Amy did their own spin on the end-of-year Top Ten lists and you can’t miss it! We list our favorite episodes across the BloodStream Media network during 2021 and hear Patrick’s top discoveries since becoming vegetarian. 

Show Notes:

Presenting Sponsor: Takeda

Subscribe to BloodStream Podcast: Link

Top Ten BloodStream Media Episodes of 2021

  1. Cheat Codes | What Just Happened - Best of Sickle Cell Conferences, #FSCDR21: Link
  2. FLOW | What do hormones do?: Link
  3. BloodStream | Best of BloodStream @ BDC 2021: Link
  4. Cheat Codes | Impact Players on Third and Long: Santonio Holmes and Martenzie Johnson: Link
  5. The Pain Pod | “Pushing Through the Pain” Link
  6. Once Upon a Gene | How We Can Balance and Understand the Unique Struggles We Face with Caregiver Fatigue, Compassion Fatigue and Decision Fatigue with Counselor Rose Reif: : Link
  7. BloodStream: The Birth Story: Welcome Vivian Bea! Link
  8. FLOW | Men + Menstruation: Link
  9. BloodStream: Howlin' Rays, coffee's the new vitamins, and Two Disabled Dudes! Link
  10. BloodStream | Diversity, Equity, and Inclusivity in Bleeding Disorders w/ Connie Montgomery : Link

Connect with BloodStream Media:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Dec 10, 2021
Patrick and Amy welcome Dr. Len Valentino, CEO with The National Hemophilia Foundation and HFA CEO Sharon Meyers to give listeners a review of 2021 and lookahead to 2022. 

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:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Nov 26, 2021
Patrick and Amy welcome onto the show Connie Montgomery, a retired occupational therapist, active volunteer, and person living with Factor VII deficiency, who joins BloodStream contributor and social worker Alex Abreu Boria for an open conversation on issues and experiences related to diversity, equity, and inclusion in bleeding disorders.

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:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Nov 12, 2021
Patrick and Amy are joined by hemophilia patients and advocates Laurence Woollard, Dakota Rosenfelt, and Richard Gorman to discuss their recently published article, Improving patient informed consent for haemophilia gene therapy: the case for change.

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:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Oct 22, 2021
Wes Michael from Rare Patient Voice joins Amy and Patrick for a discussion about surveys and paid research opportunities in bleeding disorders before Josh Bragg returns with the latest installment of the Let’s Talk mental health segment.

 

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:

BloodStreamMedia.com

BloodStream on Facebook 

BloodStream on Twitter 

Oct 8, 2021
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 

Sep 24, 2021

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

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

Sep 17, 2021

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

Sep 10, 2021

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

Aug 13, 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

 

Jul 30, 2021
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

 

 

Jul 9, 2021

 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

 

Jun 18, 2021

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

Jun 11, 2021

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

 

 



May 28, 2021

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



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