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BloodStream

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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Now displaying: Page 1
Apr 22, 2019

Empowerment isn’t something that appears out of thin air - it’s a culmination, an evolution. Our third and final episode shows how bringing women together and believing their stories leads to empowerment, which these women then spread to their families and communities back home. It illustrates how one well-crafted weekend of education, connection, and fun can shape the next twenty years.


Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Apr 16, 2019

It's World Hemophilia Day and we're honoring our commitment to raise awareness around the world! Ryan Gielen (Believe Limited, Creative Director/Co-Founder & Bloodstream Media, Co-founder) brings you this special episode of Bloodstream. He sits down with the incredible artists, producers, and educators who craft and grow the projects of Believe Limited and Bloodstream Media including; FREE podcasts, FREE videos, and FREE events. Notice a theme? Everything we build for the bleeding disorders community is - and will always be - FREE! Keep listening to hear where to find these projects ...

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Apr 15, 2019

This month on The BloodStream Podcast we talk to Dr. Assad Haffar and Dr. Glenn Pierce from the World Federation of Hemophilia about World Hemophilia Day, we hear Molly Livingtone’s “Raising Kids with Hemophilia in Israel” story, Debbie de la Riva returns for our “A Moment for Mental Health Segment,” Natalie and Patrick discuss miscarriages and men as well as Canada’s troubled history with Medicare-For-All during the Like and Comment segments, and Mama Sue returns for the latest streaming recs!  All that and more on Episode 35 of The BloodStream Podcast.

 

 Presenting Sponsor

- Takeda (https://www.bleedingdisorders.com/)

 

Segment Sponsors

 

For more information about the new Emotional Health Outreach Program from The Wingmen Foundation: https://www.wingmenfoundation.org/the-emotional-health-outreach-program/

 

Latest Ask The Expert Podcast: http://www.bloodstreamexpert.com/episodes

 

Leave us a review on iTunes:  Help others find BloodStream!

 

Show Notes:

Like Segment: We Need To Talk About Miscarriages And Men

 

Share Segment: Molly Livingstone “Raising Kids With Hemophilia In Israel” 

 

Comment Segment: The doctor’s strike that nearly killed Canada’s Medicare-For-All plan, explained.

 

A Moment For Mental Health Segment:

Find a therapist in your area: https://www.psychologytoday.com/us

 

Interview Segment: Dr. Assad Haffar & Dr. Glenn Pierce

Official Website for WFH’s World Hemophilia Day Recognition

Official Website for WFH’s Humanitarian Aid Program

 

Mama Sue’s Netflix Recs:

 

 

 

Standard Connect & Subscribe links…

Apr 8, 2019

Far too often, women across the medical spectrum aren’t taken seriously by their doctors. This is particularly true within the bleeding and clotting disorders community. In this episode, we hear about the damage that’s done when women aren’t believed - and the powerful outcomes when they are.

Subscribe to BloodStream:

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Google Play: http://bit.ly/bloodstreamPlay

Apr 1, 2019

In 1999, an HTC outside Houston, TX created a retreat that focused exclusively on women with bleeding and clotting disorders in the Great Plains region. Twenty years later, it’s going stronger than ever. We start our 3-part series by exploring how these women were brought together, and the forces that have allowed this remarkable event to grow and thrive.

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

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SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Mar 18, 2019

This month on The BloodStream Podcast we discuss the questions to ask if you are considering participating in a clinical trial and how the US is struggling to think about gene therapy and rare disease drug pricing. Jonathan Hill shares his “A Long Road” story, Debbie de la Riva leads us through the first A Moment For Mental Health segment, and writer, producer, and “Unspeakable” creator Robert C. Cooper joins us for the interview.  All that and more on Episode 34 of The BloodStream Podcast.

 

Presenting Sponsor: Takeda

Latest Ask The Expert Podcast

Latest Powering Through Podcast

Leave us a review on iTunes:  Help others from BloodStream!

Like Segment: 6 Key Questions to Ask When Participating in a Clinical Trial from HemAware

A Moment For Mental Health Segment: http://www.mentalhealthamerica.net/

Share Segment: Jonathan Hill’s “A Long Road”

Interview Segment: Robert C. Cooper

Official Website for “Unspeakable”

Official Trailer for “Unspeakable”

Comment Segment: Drugs that cost as much as a house are on the way to treat rare and devastating diseases. The US is scrambling to figure out how to pay for them

 

Mama Sue’s Netflix Recs:


BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

 

Feb 18, 2019

This month on The BloodStream Podcast, we discuss “KonMari-ing” your social media timeline and the case for the controversial gene editing technology CRISPR. We hear from entrepreneur Jimi Olgahere on overcoming sickle cell disease with sickle cell disease, and actor Katy Wright-Mead joins BloodStream to discuss the Sundance Film Festival premiere of sometimes, i think about dying, her new film portraying a young woman struggling with her mental health. All that and more on Episode 33 of The BloodStream Podcast.

 

 

Presenting Sponsor: Takeda

 

Latest Ask The Expert Podcast

 

 

Leave us a review on iTunes!  Help others from BloodStream!

 

Good News for Our Global Community

 

Goodbye News In 60 Seconds:

 

Like Segment: The Secret to Actually Enjoying Your Timeline: The KonMari Timeline

 

Share Segment: Overcoming Sickle Cell with Sickle Cell ; Jimi Olghere speaks during Powering Through @ NHF’s Bleeding Disorders Conference 2017

 

Comment Segment: The Case For CRISPR Babies

 

Interview Segment: sometimes, i think about dying: Official Website

 

Mama Sue’s Netflix Recs:

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Jan 21, 2019

This month on The BloodStream Podcast, Clive Smith and the UK Haemophilia Society provide an update on the inquiry into the UK’s Contaminated Blood Scandal, Amy Board joins to discuss her new role with Ask The Expert and Believe Limited, Natalie discusses a recent article on how to “invest” in your health, Patrick recaps a the HemAware story on New York Rangers Coach Dan Quinn, and we introduce a new segment: Mama Sue’s Netflix Recs. All that and more on Episode 32 of The BloodStream Podcast!

 

Presenting Sponsor: Shire

 

Latest Ask The Expert Podcast

 

Latest Powering Through Podcast

 

Leave us a review on iTunes!  Help others from BloodStream!

 

Community News In 60 Seconds:

Like Segment: The Right Way to Invest in Your Health

 

Comment Segment: New York Rangers Coach David Quinn on Hockey and Hemophilia

 

Interview Segment: Amy Board, the new host of Ask The Expert!

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

 

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Dec 17, 2018

This month on The BloodStream Podcast, Natalie brings you a 2018 year in review, highlighting some of BloodStream’s greatest moments from the past year.  All that- plus Believe Limited’s creative director Ryan Gielen hosts an interview with several teens who participated in the Breaking Through! Musical Theater Intensive in New York City- and more, on episode 31 of the BloodStream Podcast!

 

Exclusive Sponsor: Shire

Latest Ask The Expert Podcast:

Latest Powering Through Podcast:

TeenImpactAwards.com

BombardierBlood.com

STBhemo.com (Stop The Bleeding!)

Leave us a review on iTunes!  Help others from BloodStream!

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Nov 19, 2018

This month on The BloodStream Podcast, Patrick brings you to New England Hemophilia Association’s (NEHA) FallFest to learn about “Current and Emerging Therapies in Hemophilia Care,” and to highlight presentations on the Teen Impact Awards, Stop The Bleeding!, and Bombardier Blood during NEHA’s FallFest. All that- plus a new Share segment from NHF’s Nikole Scappe- and more, on episode 30 of the BloodStream Podcast!

Exclusive Sponsor: Shire

Latest Ask The Expert Podcast: Ep. 20: Women with Bleeding Disorders - w/ Tammy Davenport - October 29, 2018

Latest Powering Through Podcast: Ep. 22 - Colorado w/ Cathy Bombardier, Lacey Jay Henderson and Seth Rojhani

CHECK IT OUT!

TeenImpactAwards.com

BombardierBlood.com

STBhemo.com (Stop The Bleeding!)

Leave us a review on iTunes!  Help others from BloodStream!

 

Share Segment: Leave Your Fingerprint by Nikole Scappe

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Oct 22, 2018

This month on The BloodStream Podcast, Natalie records from the National Hemophilia Foundation’s 70th Annual Bleeding Disorders Conference, bringing highlights, small interviews and generally providing the flavor of this year’s annual meeting. In addition to conference coverage, this month we also hear from community member Ben Martin in our Share segment. All that and more on Episode 29 of The BloodStream Podcast!

 

Exclusive Sponsor: Shire

 

Latest Ask The Expert Podcast: 

Ep. 19: The Model Volunteer - w/ Maryann May - September 24, 2018

Latest Powering Through Podcast: 

Ep. 21 - NorCal w/ Lauren Barbounis & Jeremy Dodson

TeenImpactAwards.com

 

TeenImpactAwards.com

 

BombardierBlood.com

 

STBhemo.com (Stop The Bleeding!)

 

Leave us a review on iTunes!  Help others from BloodStream!

 

Welcome to the Club by Ben Martin

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Sep 17, 2018

This month on The BloodStream Podcast, the National Hemophilia Foundation’s (NHF) CEO Val Bias and SVP Dawn Rotellini preview NHF’s 70th Annual Bleeding Disorders Conference taking place October 11th-13th in Orlando, Florida.  UK Haemophilia Society trustee Clive Smith shares his Ironman story, Natalie leads a discussion on wearables and health outcomes, and Patrick walks through the recent The Atlantic article on hemophilia and gene therapy titled: The Patients Who Don’t Want To Be Cured. All that and more on Episode 28 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Believe @ #NHF2018: BelieveLTD.com/NHF2018

Latest Ask The Expert Podcast: Ep. 18: Career Counselor Episode - w/ Don Molter - August 27, 2018

Latest Powering Through Podcast: Ep. 20 - NEHA w/ Dr. Jonathan Bernstein, Dr. Stacy Croteau, Emily Bisson, & Caitlin Montcrieff

CHECK IT OUT!

TeenImpactAwards.com

BombardierBlood.com

STBhemo.com (Stop The Bleeding!)

Leave us a review on iTunes!  Help others from BloodStream!

Community News In 60 Seconds:

11-YEAR-OLD WITH RARE BLEEDING DISORDER BAKES ONE-OF-A-KIND CAKES FOR OTHER SICK KIDS

Hemophilia Center of Western New York awards $890,000 grant to UB to address shortage of specialists in non-malignant blood disorder

uniQure (QURE) Reports First Patient Treated in Dose-Confirmation Study of AMT-061 in Patients with Hemophilia B

IDELVION® 3500 IU Vials Now Available to Provide Convenience to Patients

Catalyst Biosciences Announces Publication of Marzeptacog Alfa (Activated) Phase 1 Data in The Journal of Thrombosis and Haemostasis

Promising Data Supports Development of AAVhu37-based Gene Therapy for Hemophilia A

 

Like Segment: Fitness trackers turn health into a game that users rarely win ‘Beyond the Wrist: Rethinking Wearable Technology for Mental Health

Share Segment: Clive Smith - Iron Out The Obstacles

Comment Segment: The Patients Who Don’t Want To Be Cured

Interview Segment: NHF CEO Val Bias and SVP Dawn Rotellini Preview NHF BDC 2018

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Aug 20, 2018

 This month on The BloodStream Podcast, Shari Luckey shares her “Living in the Shadows with Mild Hemophilia story, Natalie presents an article on the things you need to know before purchasing CBD oil, we bring to you updates on the legal dispute between Roche/Genentech, and we hear from participants and organizers of the Wheels For The World Barry Haarde Memorial Bike Ride. All that and more on Episode 27 of The BloodStream Podcast!

 

Exclusive Sponsor: Shire

 

Latest Ask The Expert Podcast: Ep. 17: Mental Health - w/ Debbie de la Riva - July 23, 2018

Latest Powering Through Podcast: Ep. 19 - Idaho w/ Preston Bowling, Skyler Openshaw, & Allie Cashel

 

TeenImpactAwards.com

 

BreakingThroughHemophilia.com

 

STBhemo.com (Stop The Bleeding!)

 

Leave us a review on iTunes!  Help others from BloodStream!

 

Community News In 60 Seconds

Like Segment: Before You Buy CBD Oil Online, Ask These Questions

 

Share Segment: Shari Luckey - Living in the shadows with Mild Hemophilia

Comment Segment:

Update on Shire Injunction Filing on Roche/Genentech

Court Rules on Shire/Roche Preliminary Injunction

 

Interview Segment: Laurie Kelley

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Jul 16, 2018

This month on The BloodStream Podcast, community member Lidia Ruiz shares her “An Unexpected Blessing” story, Natalie presents an article on the Step Therapy bill headed to Rhode Island’s state house, we highlight ASH, ISTH, NHF, and WFH’s collaboration in developing clinical practice guidelines for VWD and expectant mom, Rebecca Haber, shares with us how her pregnancy led to discovering that she has Hemophilia C (Factor XI deficiency) in this month’s Interview Segment. All that and more on Episode 26 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Latest Ask The Expert Podcast: Ep. 16: Nutrition - w/ Tracy Mann - June 25, 2018

Latest Powering Through Podcast: Ep. 18 - Florida w/ Lilliam Bervis, Bobby Monohan, & Allie Cashel

TeenImpactAwards.com

BreakingThroughHemophilia.com

STBhemo.com (Stop The Bleeding!)

Leave us a review on iTunes!  Help others from BloodStream!

Community News In 60 Seconds:

  1. Does CRISPR cause cancer?

  2. Developing Inhibitors Inflates Treatment Costs and Impairs Quality of Life, Study Finds

  3. New Canadian study to improve eradication of inhibitors in Hemophilia A patients)

  4. uniQure Enrolls First Patient in Phase III HOPE-B Pivotal Study of AMT-061 in Patients with Hemophilia B)

  5. NHS England greenlights hemophilia drug

  6. CHMP recommends EU marketing authorization for Veyvondi® [vonicog alfa, recombinant von Willebrand factor] for adults with von willebrand disease]

  7. Hemophilia Drug Development Summit Takes Aim at Hurdles Facing New and Upcoming Treatments

  8. Oxidation of FVIII Increases Immune Response in Hemophilia A Mouse Model, Study Finds)

Like Segment: 'Step Therapy' Bill Headed to RI State House // Stand Against Step Therapy: http://www.steptherapy.com/

Share Segment: Lidia Ruiz - An Unexpected Blessing

Comment Segment:

NHF, WFH, ISTH, and ASH to collaborate on clinical practice guidelines for von willebrand disease.

Help Inform Guidelines for VWD Diagnosis and Care

BetterYouKnow.org

Interview Segment: Rebecca Haber

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

Jun 18, 2018

This month on BloodStream, we review major takeaways from World Federation of Hemophilia’s 2018 World Congress, Dakota Rosenfelt shares his journey of life with hemophilia, and we speak with Lisa Thibeault, the nurse coordinator from the Southeastern Ontario Regional Inherited Bleeding Disorders Program in Ontario, Canada, about the progress made in the treatment of women with bleeding disorders. All that and more on Episode 25 of The BloodStream Podcast!

Exclusive Sponsor: Shire

World Federation of Hemophilia 2018 World Congress

World Congress Daily Recaps

FDA Clears way for gene therapy

BioMarin presents data on BMN 270

Bayer presents insights on HemACTIVE study

Novo Nordisk presents data on Rebinyn and presents study data on NovoEight

CSL Behring Supports patient advocacy groups through LEAD Program

Octapharma presents data on SubQ-8 and presents data on Nuwiq

UniQure presents data their AAV5 gene therapy program

Bioverativ (a Sanofi company) presents preliminary data for BIVV001

Shire presents data on rVWF in the treatment of people with VWD

National Hemophilia Foundation’s Dawn Rotellini elected to WFH’s Board of Directors.

Genentech/Roche received Priority Review from the FDA for Hemlibra in Hem A patients without inhibitors.

coreHEM publishes Core Outcome Set for Hemophilia Clinical Trials

Spark and Pfizer present data on SPK-9001 and the modified process

New study looks at Von Willebrand Disease, Von Willebrand Factor, and Aging

 

Latest Ask The Expert Podcast: Episode 15 featuring Shari Luckey

Latest Powering Through Podcast: Episode 17 featuring Vanessa Flora, Jason Flora, and Heather Stephenson

Share Segment: Dakota Rosenfelt - A Prescription for Success

Interview Segment: Lisa Thibeault, RN - Let’s Talk Period, from Queen’s University + partners

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

May 24, 2018

Day 5 from WFH's 2018 World Congress is in the books, as is the 2018 Congress itself!  What a few days it's been.  We spend a few minutes reviewing today and capsuling the conference before saying goodbye from Glasgow!

During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018.

Follow Along: #WFH2018

WFH's Congress News Daily.

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

May 23, 2018

Day 4 from WFH's 2018 World Congress is in the books, and The BloodStream Podcast daily recap is ready!

During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018.

Follow Along: #WFH2018

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

May 22, 2018

Special guest Laurence Woollard from the UK joins The BloodStream Podcast for Day 3 of the World Federation of Hemophilia's World 2018 Congress!

During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018.

Follow Along: #WFH2018

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui


Read more at http://bloodstream.libsyn.com/wfh-world-congress-day-2-recap?tdest_id=394637#PUDeY18LOFqdFlpE.99

May 21, 2018

During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018.

Follow Along: #WFH2018

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

May 21, 2018

This month on The BloodStream Podcast, Nabila Husseni from Gujarat, India shares her story of living with Factor V deficiency and championing women’s equality, Natalie presents a recent NBC story on the rise of depression, we discuss Takeda’s acquisition of Shire, and Hope For Hemophilia founder Jonathan James joins us for the Interview Segment. All that and more on Episode 24 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Latest Ask The Expert Podcast: Episode 14 - Physical Therapy 

Latest Powering Through Podcast: Episode 16 - HANY's Family Education Conference

Like Segment: Major depression on the rise among everyone, new data shows

// Depression Symptoms  

Share Segment: Nabila Husseni- Strength

Comment Segment: Japan's Takeda clinches $62 billion Shire Deal

Interview Segment: Hope for Hemophilia  

Community News in 60 Seconds:

Hemlibra Named a Breakthrough Therapy for Hemophilia A Without Inhibitors

On World Hemophilia Day, Bioverativ Shares Success Stories from the Developing World

CRISPR “One Shot" Cell Therapy for Hemophilia Developed

Gene-Editing Study in Monkeys Sets Stage for Further HIV Cure Research

Gene Therapy Injected Into Dog Muscle Fares Well in Hemophilia B Study

Hemophilia therapy could be first drug with $1M price tag: 3 things to know

Seattle Plans to Build an AIDS Memorial Called The AMP

 

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May 20, 2018

During this week long special edition of The BloodStream Podcast, host Patrick James Lynch posts daily recaps of the World Federation of Hemophilia's World Congress, held in Glasgow, Scotland from May 20th to May 24th, 2018. #WFH2018

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Find all of our bleeding disorders podcasts on BloodStreamMedia.com

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Apr 16, 2018

This month on The BloodStream Podcast, Dr. Steven Pipe joins us to discuss Hemlibra, the recently reported patient deaths, and what this means for our community. FDNY Lieutenant, CVS pharmacist, and FEMA volunteer Bill Patsakos joins us to discuss accounting for the bleeding disorders community during disaster relief, and advocate Maryann May shares her #ibleedtoo story. All that and more on Episode 23 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Like Segment: What Is Floating?  Sensory Deprivation Benefits // Floatation Locations

Share Segment: Maryann May - #ibleedtoo 

Comment Segment: National Hemophilia Foundation: Statement From Genentech Regarding Hemlibra

Interview Segment: Eyewitness To Destruction from LA Kelley Communications

Community News in 60 Seconds:

The Ambrosio family of the New York City Hemophilia Chapter celebrated their 10th annual benefit fundraiser

CSL Plasma Introduced Miguel Angel Jiminez to children with hemophilia during a PGA Champions Tour event

Scientists in Australia have identified a gene-control mechanism that enables some individuals to produce a fetal form of hemoglobin, offsetting the severity of certain blood diseases

Precision Develops Better Way of Detecting Levels of Clotting Factor Inhibitors

BioMarin Wins Award for Getting Gene Therapy Facility Operational Ahead of Time

Many Hemophilia B Patients Have Pain, Depression and Overall Poor Health, Study Finds

New Method May Improve Delivery of Targeted Gene Therapies   

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Find all of our bleeding disorders podcasts on BloodStreamMedia.com

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Mar 19, 2018

This month on The BloodStream Podcast, community member Kevin Krivosik shares his journey toward independence, Camp Casey Founder Molly Reeser joins us to share the camp’s mission and her inspiration for starting it, and we take a look a recent Forbes Magazine piece highlighting one of the many challenges in mental health treatment. And using a combination of written statements, audio recordings, and his own original writing, we say goodbye to community leader Barry Haarde. All that and more on Episode 22 on The BloodStream Podcast!

 

Exclusive Sponsor: Shire

 

Hemophilia and Young Adulthood, a new podcast series: BloodLinePod.com

 

Bleeding Disorders Awareness Month: RedTieCampagin.org

 

Like Segment: Psychiatrist Shortage Escalates As U.S. Mental Health Needs Grow

 

Share Segment: Kevin Krivosik - “Third Time’s a Charm”

Comment Segment/Remembering Barry Haarde: Remembering the Rain: Barry Haarde

 

Interview Segment: Camp Casey Founder Molly Reeser

 

Community News in 60 Seconds:

Patient Advocacy Groups Worldwide Plan Events Marking Rare Disease Day (Feb 28)

The National Heart, Lung, and Blood Institute to host workshop on Factor VIII Inhibitors May 15-16 in Bethesda, Md.

 

The UK’s First Genome-Editing Study Is Underway with Phase ½ on SB-FIX

 

Hemlibra receives approval in Europe

 

Adynovate receive approval in South Korea

 

Eloctate show “promise” for use in immune tolerance induction (ITI) therapy.

 

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Find all of our bleeding disorders podcasts on BloodStreamMedia.com

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Feb 19, 2018

This month on The BloodStream Podcast, we discuss how one executive director in China has creatively given hope, dignity and income to her patients, we take you through how to stay fit and healthy while travelling, and we introduce a brand new game here on the BSpod. Plus, Hannah Lutz shares her story of life with Type 3 Von Willebrand Disease and Michael Hargett- the hemophiliac who lost 280 pounds and became the first person with hemophilia to undergo a heart transplant- joins us as today’s interview guest to discuss his remarkable journey. All that and more on Episode 21 of The BloodStream Podcast!

 

Exclusive Sponsor: Shire

Remembering Barry Haarde: Powering Through HFA 2016

Like Segment: How to Fit in Exercise While You Travel

 

Share Segment: Hannah Lutz - Type Three Girl 

 

Comment Segment: How Paper and Scissors Gave Back Dignity to Hemophilia Patients

 

Interview Segment: Michael Hargett’s NewHeart4Mike.com website

 

Community News in 60 Seconds:

 

Parting Shots:

#EAHAD2018 on Twitter

 

Other Links of Interest

 

BloodFeed:

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Connect with BloodStream:

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Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

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Jan 15, 2018

This month on The BloodStream Podcast, Shire and Roche are locked up in a legal dispute related to Hemlibra, what does this mean and will it impact patients’ ability to receive Hemlibra? We discuss in today’s Comment Segment. A New York Times article examines why the United States spends so much more money on healthcare than any other country in a story presented by Natalie in our Like Segment, and entrepreneur and hemo dad Mark Kenny shares his compelling story and perspective during our Share Segment. Plus Natalie and I sit down with hemo mom (and Patrick’s mom!) Susan Lynch to get her perspective of being introduced to hemophilia in the mid-1980’s and how she navigated being a single parent of two kids with hemophilia during the advent of recombinant products and prophylaxis. All that and more on this Episode 20 of The BloodStream Podcast!

Exclusive Sponsor: Shire

Like Segment:  Why the US spends so much more money on other nation’s than Healthcare.

Share Segment: Mark Kenny: Entrepreneur and Hemo Dad 

Comment Segment: Shire and Roche locked in legal dispute over Hemlibra.

Links:

From Biopharma Dive, “Shire looks to stall Hemlibra impact with court injunction”

From Reuters, “Roche, Shire court fight escalates over haemophilia drug”

From Shire, “Shire Files Preliminary Injunction Against Roche to Protect Its Intellectual Property”

 

Parting Shots:

Syria allows some patients to leave besieged area

Von Willebrand Disease in Dogs: Symptoms, Causes, & Treatments

Woman awarded £9m damages for care of son who 'should not have been born'

 

Other Links of Interest

World Federation of Hemophilia’s Government Support in Armenia

Chris Bombardier’s Adventures of a Hemophiliac Facebook Page

Powering Through Podcast

Ask The Expert Podcast

 

BloodFeed:

https://www.bloodfeed.com

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

BloodStream Twitter Account

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

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