Ep. 28: September 17, 2018 - w/ Val Bias and Dawn Rotellini

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BloodStream Episode 28 - Val Bias and Dawn Rotellini - Banner.png

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

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STBhemo.com (Stop The Bleeding!)

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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

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Ep. 27: August 20, 2018 - Wheels for the World

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BloodStream Podcast - Ep 27 - Wheels for the World - Banner.png

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

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BreakingThroughHemophilia.com

STBhemo.com (Stop The Bleeding!)

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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

 

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Ep. 26: July 16, 2018 - w/ Rebecca Haber

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BloodStream - Ep 26 - Rebecca Haber - Banner.png

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

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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

 

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Ep. 25: June 18, 2018 - w/ Lisa Thibeault

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_BloodStream Episode 25 - Lisa Thibeault - Banner.png

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

 

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Ep. 24: May 21, 2018 - w/ Jonathan James

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BloodStream Episode 24 - Jonathan James - Episode Banner.png

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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Ep. 23: April 16, 2018 - w/ Bill Patsakos

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BloodStream Episode 23 - Bill Patsakos - Banner.png

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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Ep. 22: March 19, 2018 - w/ Molly Reeser

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BloodStream Episode 22 - Molly Reeser - Episode Banner.png

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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Ep. 21: February 19, 2018 - w/ Michael Hargett

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BloodStream Ep 21 - FB Banner - V2.png

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 traveling, 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:

Registration for NHF’s Washington Days

Registration for NHF’s Bleeding Disorders Conference

Patient Access Network Foundation Opens Hemophilia Patient Assistance Fund

Hemophilia Puts Damper on Patient’s Sex Life and Health Status, Study Reports

My Life, Our Future to be Featured in CDC Public Health Webinar

NORD Launches 7,000 Mile Rare Movement

Rebinyn Now Available for the Treatment of Hemophilia B

Sanofi, Facing Threat From Generics, Moves to Buy Hemophilia Drug Makers (Bioverativ)

Europe’s CHMP Recommends Approval of Hemlibra to Treat Hemophilia A (with Inhibitors)

Shire Granted European Union Marketing Authorization for Adynovi

Parting Shots:

#EAHAD2018 on Twitter

Other Links of Interest

Project CALLS from Hemophilia Federation of America

HTCtour.org- Stop The Bleeding’s Guided Tour of a Hemophilia Treatment Center

BloodStreamMedia.com

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Ask The Expert Podcast

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Ep. 20: January 15, 2018 - w/ Susan Lynch

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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

 

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Ep. 19: December 18, 2017 - w/ Val Bias

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BloodStream Episode 19 - Val Bias - Website Banner.png

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"

 

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Ep. 18: November 20, 2017 - w/ Alex Borstein

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BloodStream Podcast - Episode 18 - Episode Banner.png

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

http://variety.com/2017/tv/news/the-marvelous-mrs-maisel-amazon-amy-sherman-palladino-albert-cheng-1202614481/

Other Links of Interest

FDA’s announcement about "Hemlibra"

Powering Through Podcast

Ask The Expert Podcast

 

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Ep. 17: October 16, 2017 - w/ Dan Levy

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Screen Shot 2017-10-17 at 7.33.30 PM.png

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 Share Comment

Like: Five things all new mothers need.

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

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

Why (some of) the GOP is Pushing for Medical Marijuana Research || Rolling Stonen

Justice Department at Odds with DEA Over Marijuana Research. || Washington Post

Sen. Hatch Introduces Medical Marijuana Research Bill || Orrin Hatch Campaign Website

Dan Levy Interview

Marvel Honors Boy Fighting Hemophilia With Cameo in ‘Iron Man’ Comic | NBC Nightly News

Inspiring America: Checking In On Real Life Super Hero Kid ‘Iron Max’

Hearts 4 Hemophilia

 

Powering Through Podcast

Ask The Expert Podcast

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Ep. 16: September 18, 2017 - w/ Andy Slavitt

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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

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

JAMA Forum: Reforming Medicaid

USA Today Column: Spare America a do-over on health care. Seize the bipartisan moment.

Other Links of Interest

Clinical Trials 101 from HemAware

Clinical Trials from the Hemophilia Federation of America

Powering Through Podcast

Ask The Expert Podcast

Making-Of Bombardier Blood Video

Stop The Bleeding! Season 7 - Behind The Story Videos

Hope For Hemophilia

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Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

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Ep. 15: August 21, 2017 - w/ Special Guests from NHF

Click the play button below to stream the episode via SoundCloud!

BloodStream Ep. 15 - Website Banner.png

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: Shire

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

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

Connect with BloodStream:

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Facebook Page

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Ep. 14: July 17, 2017 - w/ Special Guest Dr. Steven Pipe

Click the play button below to stream the episode via SoundCloud!

On this episode, Dr. Steven Pipe- pediatric hematologist and Chair of the National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council- provides an update on new and developing treatment products immediately following his attending the International Society on Thrombosis and Hemostasis (ISTH) Congress. Natalie leads a discussion on a recent CDC study that indicates opioid prescriptions are on the decline, Patrick initiates a game based on a new bleeding disorders online platform, and a community member shares her take on platelet disorders. All this and more on Episode 14 of The BloodStream Podcast! Click “Episodes” above to stream or download

Exclusive Sponsor for Episode 14: Shire

Opioid Prescriptions Fall After 2010 Peak, C.D.C. Report Finds:  Link To Article

Rare Platlet Disorders: Link To Article

ISTH Congress 2017 Headlines:

BioMarin and Spark: Link To Article

Idelvion: Link To Article

Emicizumab: Link To Article

Nuwiq: Link To Article

Q&A with R&D chief of Bioverativ: Link To Article

Steven Pipe presents small molecule therapies: Link To Article

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

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Ep. 13: June 19, 2017 - w/ Special Guest Rob Bradford

Click the play button below to stream the episode via SoundCloud!

In this episode, Patrick & Natalie discuss a recent study highlighting the issue of patient aging, a story about a young Iowan with hemophilia whose healthcare costs recently made national waves, and the latest on the American Health Care Act. Plus, our hosts sit down for an in-person interview of Believe Limited’s own Rob Bradford, recently back from spending 47 days at Mount Everest base camp filming and managing footage for Bombardier Blood, the documentary on Chris Bombardier’s historic summiting of the world's tallest mountain! All this and more on Episode 13 of BloodStream! Click "Episodes" above to stream or download.

Exclusive Sponsor for Episode 13: Shire

Like Share Comment:

Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link To Article.

Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link To Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016).

Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link To Article from NHF: How to Advocate to Protect Access to Health Insurance. Link To NHF’s Share Your Story Campaign

  

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

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Ep. 12: May 15, 2017 - Year In Review

Click the play button below to stream the episode via SoundCloud!

In this episode, Patrick and the BloodStream team celebrate the first year of the BloodStream podcast! Patrick leads us through this "Year In Review" episode by bringing us your favorite sequences from the past year of episodes. Listen to fan-favorite and milestone moments of the first year and remind yourself of all the things you learned. All this and more on Episode 12 of BloodStream! Click "Episodes" above to stream or download.

Supporting Sponsor for Episode 12: Shire

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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Ep. 11: April 17, 2017 - World Hemophilia Day Special Episode

Click the play button below to stream the episode via SoundCloud!

BloodStream Ep 11 - FB Boostable - V4.png

In this episode, Patrick and Natalie celebrate World Hemophilia Day with two special segments: an interview recap with Patrick of Believe Limited's recent trip to Nepal for production on Bombardier Blood and a mashup of soundbites and interview clips from Believe's production on the World Federation of Hemophilia's Treatment for All web series. All that, plus a few special announcements and a brief recap of Hemophilia Federation of America's Annual Symposium on Episode 11 of The BloodStream Podcast!

Sponsor for Episode 11: Shire

Learn more about World Hemophilia Day from the World Federation of Hemophilia (WFH): Link To Article

Check out Stop The Bleeding!’s Season 7 launch w/ their a World Hemophilia Day special episode: Link To Article

Listen to BloodStream Media’s new Von Willebrand Disease podcast series from BloodLine: Link To Article

Check out Hemophilia Federation of America’s website for more on the 2017 and 2018 Symposiums: Link To Article

Special Segments

Learn more about Chris Bombardier’s historic climb of Mount Everest as well as Bombardier Blood, the documentary film being produced about it: Link To Article

Watch all 10 episodes of WFH’s Treatment for All web series and learn more about their Humanitarian Aid Program: Link To Article
 

Contact BloodStream Media:

Got an idea for a future segment, or a question for Ask The Expert? Email us: mailbag@bloodstreammedia.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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Ep. 10: March 20, 2017 - W/ Special Guest Justin Levesque

Click the play button below to stream the episode via SoundCloud!

In this episode- it's Bleeding Disorders Awareness Month! Patrick and Natalie discuss that, Washington Days, the landmark opening of the My Life, Our Future research repository, and more! Also, Australian community member Jenna Lovell gives her take on life w/ vWD, and Mainer Justin Levesque discusses photography, hemophilia, Iceland, and much more during a wide-ranging Sit-Down conversation with Patrick. All this and more on Episode 10 of The BloodStream Podcast!

Sponsors for Episode 10:

Presenting Sponsor: Stop The Bleeding! (STB!)

Supporting Sponsor: Shire

Trending Topics:

EMA Names Investigational Gene Therapy, BMN 270, a Priority Medicine for Hemophilia A: Link To Article

FDA Gives Breakthrough Designation to Hemophilia Gene Therapy: Link To Article

Daily Infusion of Low-dose Factor VIII Found to Benefit Some Hemophilia A Patients: Link To Article

LA Kelley Launches a New Edition of Raising a Child With Hemophilia: Link To Article Learn more about all of LA Kelley’s offerings: Link To Article

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business: Link To Article

HFA 2017 Policy & Government Relations Internship: Link To Article

New and Improved Blood Brotherhood Forum from HFA: Link To Article

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business: Link To Article

 

Like Share Comment:

Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link To Article.

Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link To Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016).

Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link To Article from NHF: How to Advocate to Protect Access to Health Insurance. Link To NHF’s Share Your Story Campaign

 

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

 

Ep. 9: February 20th, 2017 - w/ Jorge de la Riva

Click the play button below to stream the episode via SoundCloud!

In this episode, Patrick and Natalie review some advocacy best practices, take a look at the increasingly popular cryotherapy, share one mom's (anonymous) story of addiction, hemophilia and family, and during the Sit-Down segment, Patrick speaks with NHF board member Jorge de la Riva about how NHF's board works, his views on health and social advocacy, and his family's personal story of being introduced to hemophilia. All this and more on Episode 9 of BloodStream! Click "Episodes" above to stream or download.

 

Sponsors for Episode 9:

Presenting Sponsor: Stop The Bleeding! (STB!)

Supporting Sponsor: Shire

Trending Topics:

EMA Names Investigational Gene Therapy, BMN 270, a Priority Medicine for Hemophilia A: Link To Article

FDA Gives Breakthrough Designation to Hemophilia Gene Therapy: Link To Article

Daily Infusion of Low-dose Factor VIII Found to Benefit Some Hemophilia A Patients: Link To Article

LA Kelley Launches a New Edition of Raising a Child With Hemophilia: Link To Article Learn more about all of LA Kelley’s offerings: Link To Article

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business: Link To Article

HFA 2017 Policy & Government Relations Internship: Link To Article

New and Improved Blood Brotherhood Forum from HFA: Link To Article

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business: Link To Article

Like Share Comment:

Like: What is cryotherapy and is it effective/safe for people with chronic pain and/or joint problems? Link To Article.

Share: A community Mom shares her story on addiction, family, and bleeding disorders. Link To Article from HFA: Opioids, Addiction, & Bleeding Disorders (Jan 2016).

Comment: Advocacy, Washington Days, and how to advocate an advocate community member: Link To Article from NHF: How to Advocate to Protect Access to Health Insurance. Link to NHF’s Share Your Story Campaign

Sit-Down Segment with NHF Board Member Jorge de la Riva

Jorge on Twitter Link

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

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