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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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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

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TuneIn: http://bit.ly/bloodstreamtunein

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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

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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

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Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

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TuneIn: http://bit.ly/bloodstreamtunein

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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

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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

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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

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Subscribe to BloodStream:

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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

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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

 

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 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

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 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   

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

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.

 

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 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:

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 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

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

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

Dec 18, 2017

This month on The BloodStream Podcast, Hemlibra is FDA approved and the first non-factor replacement therapy to treat people with hemophilia A (and inhibitors) is now on the market, we’ll discuss that along with other major product development takeaways from the American Society of Hematology’s Annual Meeting held earlier this month during our Comment Segment. Natalie will present a story on how new HIV guidelines are revolutionizing patients lives in the Like Segment, and Community Member Angel Parrett shares her story of living with Factor 1 deficiency in today’s Share Segment. Plus, Patrick sits down with National Hemophilia Foundation CEO Val Bias to review some of the major community highlights from 2017, and to look ahead at what’s to come in 2018. All that and more on Episode 19 of The BloodStream Podcast.

Exclusive Sponsor: Shire

Like Segment: ‘I don’t feel like I’m a threat anymore.’ New HIV guidelines are changing lives.

Share Segment: Angel Parrett: One In A Million: Factor 1 Deficiency 

Comment Segment: Hemlibra is FDA Approved & Major Takeaways from #ASH17

Hemlibra is FDA approved for adult and pediatric patients with severe hemophilia A and inhibitors.

AAV5-Factor VIII Gene Transfer in Severe Hemophilia A

Why Spark Therapeutics Stock Dropped Following #ASH17

Gene Therapy Nearly Eliminates Hemophilia B Bleeding Episodes, Trial Shows

Shire, Rani Therapeutics Collaborate on Pill to Treat Hemophilia A.

Guy Young, MD, on Recent Revolutions in Hemophilia Treatment

 

Other Links of Interest

Patrick discussing hemophilia and Gene Therapy on BBC’s Open Source (Interview starts at 46:50)

Powering Through Podcast

Ask The Expert Podcast

TreatmentForAll.org

Stop The Bleeding! - "Mental Health, or HoCheeCo"

 

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

Nov 20, 2017

This month on The BloodStream Podcast, we interview actress Alex Borstein who’s best known as the voice of Lois on “Family Guy.” Alex talks about her life as an entertainer, a symptomatic carrier and a hemo mom.  In our Like Segment, Natalie introduces us to the Feldenkrais Method and how it’s being used to manage chronic pain. In our Share Segment, New York City Hemophilia Chapter member Nicole Angeles shares her story of living with von Willebrand Disease, and some of the very challenging decisions it’s forced her to make. Patrick highlights Jonathan Cohn’s excellent HuffPost piece about the ousted Iowa teen with hemophilia whose insurance expense Wellmark Blue Cross Blue Shield explicitly cited to justify pulling out of the Iowa health care markets. What does this story tell us about the future of the Affordable Care Act? Find out now on Episode 18 of The BloodStream Podcast.

 

Exclusive Sponsor: Shire

 

Like Segment: The Feldenkrais Method and Chronic Pain 

 

Share Segment: Nicole Angeles’ “VWD & Me.”

 

Comment Segment: An Iowa Teenager Didn’t Wreck His State’s Health Care Market. Here’s Who Did.

 

Alex Borstein Interview

Other Links of Interest

 

BloodFeed:

https://www.bloodfeed.com

 

Oct 23, 2017

BloodStream Media is proud to present The Factor Revolution: The Last 60 Years in Hemophilia Treatment, a three-episode special series with over forty interviews from community members, doctors, experts and advocates. We take a deep look at the history of factor treatment from the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project." 

Exclusive Sponsor for The Factor Revolution: Shire

LINKS:

- ISHIM.NET - “Who Discovered Hemophilia” (Abdul Nasser Kaadan MD, PhD*, Mahmud Angrini MD**)

- JOURNAL OF CLINICAL INVESTIGATION - “HEMOPHILIA. II. SOME PROPERTIES OF A SUBSTANCE OBTAINED FROM NORMAL HUMAN PLASMA EFFECTIVE IN ACCELERATING THE COAGULATION OF HEMOPHILIC BLOOD”

- HEMOPHILIA FEDERATION OF AMERICA (HFA):

“1970s: Living with Hemophilia”

“Medical Bullentin #7 Chapter Advisory #8”

“1982—AIDS Discovered Among Patients with Hemophilia”

“1980’s: Hemophilia, HIV/AIDS, and Hepatitis C”

- HEMOPHILIA NEWS TODAY - “A Brief History of Hemophilia Treatment”

- AMERICAN SOCIETY OF HEMATOLOGY - “Hemophilia: From Plasma to Recombinant Factor”  

- NATIONAL HEMOPHILIA FOUNDATION (NHF) - “History of Bleeding Disorders”

NBC's Earliest Report on AIDS 1982

ABC News Nightline AIDS - 12/17/1982

1982 - 1992 News Clips On HIV/AIDS (The First Ten Years)

- BLOODJOURNAL - “Recombinant factor VIII products and inhibitor development in previously untreated boys with severe hemophilia A”

- WORLD FEDERATION OF HEMOPHILIA (WFH)

“The Tragic History of AIDS in the Hemophilia Population, 1982-1984”

“Recombinant FVIII product associated with higher risk of inhibitor development in newly diagnosed, previously untreated patients with severe hemophilia A”

- THE NATIONAL CENTER FOR BIOTECHNOLOGY INFORMATION - “HIV And The Blood Supply: An Analysis Of Crisis Decision Making”

- CENTER FOR DISEASE CONTROL (CDC) - “Current Trends Prevention of Acquired Immune Deficiency Syndrome (AIDS): Report of Inter-Agency Recommendations”

- HEALTH RESOURCES & SERVICES ADMINISTRATION - “Who Was Ryan White”

- LINKEDIN - “Hemophilia market is boiling- new players, new products and drug wars.”

- GENETIC ENGINEERING & BIOTECHNOLOGY NEWS - “Phase III Study Shows Roche’s Hemophilia Drug Emicizumab Prevents Bleeding in Children”

- PBS (PUBLIC BROADCAST SYSTEM) - “Bad Blood - A Cautionary Tale” Directed by Marilyn Ness, Written by Marilyn Ness and Sheila Curran Bernard

INTERVIEWS:

Bobby Wiseman (via the HIV Story Project) - Board Member of Hemophilia Council of California

Carl Weixler (via the HIV Story Project) - Board of Directors for and President of the Committee of Ten Thousand

Dana Francis (via the HIV Story Project) - The clinical social worker with the Adult Hemophilia Treatment Team at UCSF

Glenn Pierce (via the HIV Story Project) - Medical and Scientific Advisory Council (MASAC) for NHF; Previously served as president of the Board of NHF

Jeanne White-Ginder (via the HIV Story Project) - Serves on the advisory board of The AIDS Institute; Advocate & Mother of Ryan White

Louise & Clifford Ray (via the HIV Story Project) - Advocates & Parents of Ricky Ray

Mark Skinner - Former President of NHF and WFH; Current member of the Federal Advisory Committee on Blood Safety

Michelle Rice - Senior VP of external affairs for the National Hemophilia Foundation

Randy Curtis - President of the Hemophilia Council of California

Val Bias (via the HIV Story Project) - CEO of NHF

Dana Kuhn - President and founder of Patient Services Incorporated

Sue Geraghty - Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center

Various interviews from the film Bad Blood.

LINKS ON THE LGBT COMMUNITY & THE HIV/AIDS PANDEMIC

US Federal Govt Statistics & Timeline, HIV.Gov

National Institutes of Health (NIH)

Huffington Post Top Books on HIV AIDS

Ryan White Care Act

Connect with BloodStream:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodFeed: https://www.bloodfeed.com

Powering Through Podcast: http://poweringthrough.org/podcast

Ask The Expert Podcast: http://bloodstreamexpert.com

Email mailbag@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

Oct 16, 2017

This month on The BloodStream Podcast, we spotlight “Factor Revolution”, BloodStream Media’s new three-part series covering the history of treatment in hemophilia; Natalie takes us through the five things all new moms need in our Like Segment; “Factor Revolution” Producers Ryan Gielen and Seth Kirschner introduce themselves and provide a window into their work in our Share Segment; Patrick highlights recent news related to medical marijuana/cannabis use for pain management; and finally sportswriter and hemo dad Dan Levy - perhaps better known as the dad of #IronMax - shares his perspective on media, awareness, and more! Listen now on Episode 17 of The BloodStream Podcast.

 

Exclusive Sponsor: Shire

 

Like Segment: Five things all new mothers need.

 

Share Segment: “Factor Revolution” Producers Ryan Gielen and Seth Kirschner share their experience of building relationships with the bleeding disorders community.

 

Comment Segment: Medical cannabis can help reduce our nation's pain epidemic || The Hill

 

Dan Levy Interview

Other Links of Interest

 

BloodFeed:

https://www.bloodfeed.com

Powering Through Podcast

http://poweringthrough.org/podcast

Ask The Expert Podcast

http://bloodstreamexpert.com

 

 

Oct 9, 2017

BloodStream Media is proud to present The Factor Revolution: The Last 60 Years in Hemophilia Treatment, a three-episode special series with over forty interviews from community members, doctors, experts and advocates. We take a deep look at the history of factor treatment from the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project." 

Episode 2: The Contamination Crisis pulls together first-hand accounts from survivors of the HIV/AIDS outbreak, often referred to in our community as "the contamination crisis." This series - and especially this episode - was created in partnership with The HIV Story Project and the seminal documentary film, Bad Blood

Exclusive Sponsor for The Factor Revolution: Shire

LINKS:

- ISHIM.NET - “Who Discovered Hemophilia” (Abdul Nasser Kaadan MD, PhD*, Mahmud Angrini MD**)

- JOURNAL OF CLINICAL INVESTIGATION - “HEMOPHILIA. II. SOME PROPERTIES OF A SUBSTANCE OBTAINED FROM NORMAL HUMAN PLASMA EFFECTIVE IN ACCELERATING THE COAGULATION OF HEMOPHILIC BLOOD”

- HEMOPHILIA FEDERATION OF AMERICA (HFA):

“1970s: Living with Hemophilia”

“Medical Bullentin #7 Chapter Advisory #8”

“1982—AIDS Discovered Among Patients with Hemophilia”

“1980’s: Hemophilia, HIV/AIDS, and Hepatitis C”

- HEMOPHILIA NEWS TODAY - “A Brief History of Hemophilia Treatment”

- AMERICAN SOCIETY OF HEMATOLOGY - “Hemophilia: From Plasma to Recombinant Factor”  

- NATIONAL HEMOPHILIA FOUNDATION (NHF) - “History of Bleeding Disorders”

NBC's Earliest Report on AIDS 1982

ABC News Nightline AIDS - 12/17/1982

1982 - 1992 News Clips On HIV/AIDS (The First Ten Years)

- BLOODJOURNAL - “Recombinant factor VIII products and inhibitor development in previously untreated boys with severe hemophilia A”

- WORLD FEDERATION OF HEMOPHILIA (WFH)

“The Tragic History of AIDS in the Hemophilia Population, 1982-1984”

“Recombinant FVIII product associated with higher risk of inhibitor development in newly diagnosed, previously untreated patients with severe hemophilia A”

- THE NATIONAL CENTER FOR BIOTECHNOLOGY INFORMATION - “HIV And The Blood Supply: An Analysis Of Crisis Decision Making”

- CENTER FOR DISEASE CONTROL (CDC) - “Current Trends Prevention of Acquired Immune Deficiency Syndrome (AIDS): Report of Inter-Agency Recommendations”

- HEALTH RESOURCES & SERVICES ADMINISTRATION - “Who Was Ryan White”

- LINKEDIN - “Hemophilia market is boiling- new players, new products and drug wars.”

- GENETIC ENGINEERING & BIOTECHNOLOGY NEWS - “Phase III Study Shows Roche’s Hemophilia Drug Emicizumab Prevents Bleeding in Children”

- PBS (PUBLIC BROADCAST SYSTEM) - “Bad Blood - A Cautionary Tale” Directed by Marilyn Ness, Written by Marilyn Ness and Sheila Curran Bernard

INTERVIEWS:

Bobby Wiseman (via the HIV Story Project) - Board Member of Hemophilia Council of California

Carl Weixler (via the HIV Story Project) - Board of Directors for and President of the Committee of Ten Thousand

Dana Francis (via the HIV Story Project) - The clinical social worker with the Adult Hemophilia Treatment Team at UCSF

Glenn Pierce (via the HIV Story Project) - Medical and Scientific Advisory Council (MASAC) for NHF; Previously served as president of the Board of NHF

Jeanne White-Ginder (via the HIV Story Project) - Serves on the advisory board of The AIDS Institute; Advocate & Mother of Ryan White

Louise & Clifford Ray (via the HIV Story Project) - Advocates & Parents of Ricky Ray

Mark Skinner - Former President of NHF and WFH; Current member of the Federal Advisory Committee on Blood Safety

Michelle Rice - Senior VP of external affairs for the National Hemophilia Foundation

Randy Curtis - President of the Hemophilia Council of California

Val Bias (via the HIV Story Project) - CEO of NHF

Dana Kuhn - President and founder of Patient Services Incorporated

Sue Geraghty - Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center

Various interviews from the film Bad Blood.

LINKS ON THE LGBT COMMUNITY & THE HIV/AIDS PANDEMIC

US Federal Govt Statistics & Timeline, HIV.Gov

National Institutes of Health (NIH)

Huffington Post Top Books on HIV AIDS

Ryan White Care Act

Connect with BloodStream:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodFeed: https://www.bloodfeed.com

Powering Through Podcast: http://poweringthrough.org/podcast

Ask The Expert Podcast: http://bloodstreamexpert.com

Email mailbag@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

Oct 2, 2017

BloodStream Media is proud to present The Factor Revolution. The last sixty years in hemophilia treatment, with over forty interviews from community members, doctors, and advocates. We take a deep look at the history of factor treatment in the 1950's to today. The Factor Revolution pulls together source material, news reports, white papers, and original audio content from the film Bad Blood and the "HIV Story Project". 

Exclusive Sponsor for The Factor Revolution: Shire

ISHIM.NET - “Who Discovered Hemophilia” (Abdul Nasser Kaadan MD, PhD*, Mahmud Angrini MD**)

ENCYCLOPEDIA.COM - “Hemophilia Throughout History”

JOURNAL OF CLINICAL INVESTIGATION - “HEMOPHILIA. II. SOME PROPERTIES OF A SUBSTANCE OBTAINED FROM NORMAL HUMAN PLASMA EFFECTIVE IN ACCELERATING THE COAGULATION OF HEMOPHILIC BLOOD”

HEMOPHILIA FEDERATION OF AMERICA (HFA)

“1970s: Living with Hemophilia”

“Medical Bullentin #7 Chapter Advisory #8”

“1982—AIDS Discovered Among Patients with Hemophilia”

“1980’s: Hemophilia, HIV/AIDS, and Hepatitis C”

HEMOPHILIA NEWS TODAY - “A Brief History of Hemophilia Treatment”

AMERICAN SOCIETY OF HEMATOLOGY - “Hemophilia: From Plasma to Recombinant Factor”  

NATIONAL HEMOPHILIA FOUNDATION (NHF) - “History of Bleeding Disorders”

NBC's Earliest Report on AIDS 1982

ABC News Nightline AIDS - 12/17/1982

1982 - 1992 News Clips On HIV/AIDS (The First Ten Years)

BLOODJOURNAL - “Recombinant factor VIII products and inhibitor development in previously untreated boys with severe hemophilia A”

WORLD FEDERATION OF HEMOPHILIA (WFH)

“The Tragic History of AIDS in the Hemophilia Population, 1982-1984”

“Recombinant FVIII product associated with higher risk of inhibitor development in newly diagnosed, previously untreated patients with severe hemophilia A”

THE NATIONAL CENTER FOR BIOTECHNOLOGY INFORMATION - “HIV And The Blood Supply: An Analysis Of Crisis Decision Making”

CENTER FOR DISEASE CONTROL (CDC) - “Current Trends Prevention of Acquired Immune Deficiency Syndrome (AIDS): Report of Inter-Agency Recommendations”

HEALTH RESOURCES & SERVICES ADMINISTRATION - “Who Was Ryan White”

LINKEDIN - “Hemophilia market is boiling- new players, new products and drug wars.”

GENETIC ENGINEERING & BIOTECHNOLOGY NEWS - “Phase III Study Shows Roche’s Hemophilia Drug Emicizumab Prevents Bleeding in Children”

PBS (PUBLIC BROADCAST SYSTEM) - “Bad Blood - A Cautionary Tale” Directed by Marilyn Ness, Written by Marilyn Ness and Sheila Curran Bernard

INTERVIEWS:

Bobby Wiseman (via the HIV Story Project)

Board Member of Hemophilia Council of California

Carl Weixler (via the HIV Story Project)

Board of Directors for and President of the Committee of Ten Thousand

Dana Francis (via the HIV Story Project)

The clinical social worker with the Adult Hemophilia Treatment Team at UCSF

Glenn Pierce (via the HIV Story Project)

Medical and Scientific Advisory Council (MASAC) for NHF

Previously served as president of the Board of NHF

Jeanne White-Ginder (via the HIV Story Project)

Serves on the advisory board of The AIDS Institute

Advocate & Mother of Ryan White

Louise & Clifford Ray (via the HIV Story Project)

Advocates & Parents of Ricky Ray

Mark Skinner

Former President of NHF and WFH

Current member of the Federal Advisory Committee on Blood Safety

Michelle Rice

Senior VP of external affairs for the National Hemophilia Foundation

Randy Curtis

President of the Hemophilia Council of California

Val Bias (via the HIV Story Project)

CEO of NHF

Dana Kuhn

President and founder of Patient Services Incorporated

Sue Geraghty

Nurse Coordinator at the University of Colorado Denver Hemophilia and Thrombosis Center

Various interviews from Bad Blood.

LINKS ON THE LGBT COMMUNITY & THE HIV/AIDS PANDEMIC

US Federal Govt Statistics & Timeline, HIV.Gov

National Institutes of Health (NIH)

Huffington Post Top Books on HIV AIDS

Ryan White Care Act

 

Connect with BloodStream:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodFeed: https://www.bloodfeed.com

Powering Through Podcast: http://poweringthrough.org/podcast

Ask The Expert Podcast: http://bloodstreamexpert.com

Email mailbag@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

Sep 18, 2017

Andy Slavitt, the former head of Medicare, Medicaid, and the Affordable Care Act (ACA) under President Obama, joins us for a very special interview segment on the importance of the ACA for people with hemophilia. UK-based community advocate Laurence Woollard provides insight into the UK bleeding disorders community and his personal journey in hemophilia advocacy. Natalie leads a New York Times story on the debate surrounding how to price gene therapy treatments, and Patrick provides an overview of the recent, terrible news of a patient death during the Fitusrian clinical trial - what happened, what it means, and what happens next? Listen now on Episode 16 of The BloodStream Podcast.

 

Exclusive Sponsor for Episode 16: Shire

 

Like Share Comment Segments

Like: NYT: New Gene-Therapy Treatments Will Carry Whopping Price Tags

 

Share: Laurence Woollard’s “The Endeavour to Progress” 

 

Comment: Alnylam Suspends All Trials of Fitusiran After Hemophilia A Patient Dies in Phase 2 Study // Story from RareDr.com // Story from FierceBiotech

 

Andy Slavitt Interview

 

Other Links of Interest

 

BloodFeed:

https://www.bloodfeed.com

Powering Through Podcast

http://poweringthrough.org/podcast

Ask The Expert Podcast

http://bloodstreamexpert.com

 

 






Aug 21, 2017

We preview National Hemophilia Foundation’s (NHF) 2017 Annual Meeting! Interviews include NHF CEO Val Bias, NHF staff and volunteers. During our Like, Share, Comment segment, Natalie and I discuss a recent article profiling companies with notably strong employee health benefits, a World Federation of Hemophilia (WFH) article highlighting recent success in their Twinning Program, and community member Tai-yan Chou-Kudu  presents Hemophilia - Not Just Physical, a spoken-word piece on severe hemophilia A’s impact on her life and studies. All of that, plus a look at a new inquiry in the UK into the blood contamination crisis. Listen now on Episode 15 of The BloodStream Podcast!

Exclusive Sponsor for Episode 15:

Like Share Comment

Like: Nine Companies Hiring Now That Cover 100% of Employee Health Insurance Premiums

Share: Tai-yan Chou-Kudu’s “Hemophilia - Not Just Physical” (LINK TO BLOG)

Comment: Twinning successes in 2016, Inquiry to contaminated blood scandal in UK

Other Links of Interest

Powering Through Podcast Ep 7 feat. four HTC hematologists: http://bit.ly/PTpodEp7

Ask The Expert Podcast:  http://BloodStreamExpert.com

The Haemophilia Society’s Blog: http://haemophilia.org.uk/blog/

Outreach and Identification in Indonesia video from the World Federation of Hemophilia’s Humanitarian Aid Program: http://bit.ly/WFHIndonesia

Believe @ #NHF2017 Video: VIDEO NOT YET AVAILABLE.

Believe @ #NHF2017 Printed Schedule: http://BelieveLTD.com/NHF2017

https://www.hepmag.com/article/coffee-cannabis-may-protect-liver-hiv-hcv

 

BloodFeed:

https://www.bloodfeed.com

Powering Through Podcast

http://poweringthrough.org/podcast

Ask The Expert Podcast

http://bloodstreamexpert.com

 





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