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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: 2017
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

 





Jul 17, 2017

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! 

Opioid Prescriptions Fall After 2010 Peak, C.D.C Report Finds

https://www.nytimes.com/2017/07/06/health/opioid-painkillers-prescriptions-united-states.html

Rare Platlet Disorders: https://stepsforliving.hemophilia.org/basics-of-bleeding-disorders/types-of-bleeding-disorders/rare-platelet-disorders

ISTH Congress 2017 Headlines:

 
Idelvion: https://hemophilianewstoday.com/2017/07/14/hemophilia-b-pediatric-adult-patients-benefit-from-idelvion-studies-show/

 

BloodFeed:

https://www.bloodfeed.com

Powering Through Podcast

http://poweringthrough.org/podcast

Ask The Expert Podcast

http://bloodstreamexpert.com

 

Jun 19, 2017

Description:

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.

Sponsors for Episode 13:

Presenting Sponsor: Shire Link to BleedingDisorders.com

 

 

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

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

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

 

May 15, 2017

 

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.

 

Sponsors for Episode 12:

Supporting Sponsor: Shire Link to BleedingDisorders.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
Apr 17, 2017

   The BloodStream Podcast - Episode 11 - Program Notes

 

Listen to Episode 11 by clicking the play button on the audio player above, or follow any of these links to listen and subscribe on your podcast player of choice (recommended):

 

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

 

Description:

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!

 

The BloodStream Podcast is sponsored exclusively by Shire.

Learn more about Shire in the bleeding disorders community: Link.

 

Program Notes:

  • Learn more about World Hemophilia Day from the World Federation of Hemophilia (WFH): Link
  • Check out Stop The Bleeding!’s Season 7 launch w/ their a World Hemophilia Day special episode: Link.
  • Listen to BloodStream Media’s new Von Willebrand Disease podcast series from BloodLine: Link.
  • Check out Hemophilia Federation of America’s website for more on the 2017 and 2018 Symposiums: Link.

 

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

Contact BloodStream Media:

Got an idea for a future segment, or a question for Ask The Expert? Email us: mailbag@bloodstreammedia.com.

 

BloodStream Media on Social:

BloodStream Facebook Page

BloodStream Twitter Account

BloodStream Host Patrick James Lynch on Twitter and Instagram.

 

Subscribe to The BloodStream Podcast:

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

 

Mar 20, 2017

Description:

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!) Link to STB! Website

Supporting Sponsor: Shire Link to BleedingDisorders.com

 

Trending Topics:

EMA Names Investigational Gene Therapy, BMN 270, a Priority Medicine for Hemophilia A (Link)

FDA Gives Breakthrough Designation to Hemophilia Gene Therapy (Link)

Daily Infusion of Low-dose Factor VIII Found to Benefit Some Hemophilia A Patients (Link)

LA Kelley Launches a New Edition of Raising a Child With Hemophilia (Link) Learn more about all of LA Kelley’s offerings (Link)

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link)

HFA 2017 Policy & Government Relations Internship (Link)

New and Improved Blood Brotherhood Forum from HFA (Link)

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link)

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

 

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Feb 20, 2017

 

Description:

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 8:

Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website

Supporting Sponsor: Shire Link to BleedingDisorders.com

 

Trending Topics:

EMA Names Investigational Gene Therapy, BMN 270, a Priority Medicine for Hemophilia A (Link)

FDA Gives Breakthrough Designation to Hemophilia Gene Therapy (Link)

Daily Infusion of Low-dose Factor VIII Found to Benefit Some Hemophilia A Patients (Link)

LA Kelley Launches a New Edition of Raising a Child With Hemophilia (Link) Learn more about all of LA Kelley’s offerings (Link)

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link)

HFA 2017 Policy & Government Relations Internship (Link)

New and Improved Blood Brotherhood Forum from HFA (Link)

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business (Link)

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

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

 

Feb 12, 2017

Believe Limited is excited to announce the launch of not one but TWO new podcasts! Ask the Expert and The Powering Through Podcast join our flagship podcast BloodStream™ to round out the growing BloodStream Media Network. Read a bit more about both podcasts below and make sure to subscribe on your favorite platform! Check out BloodStreamMedia.com!

Ask The Expert features a HTC hematologist or other healthcare expert answering listener-submitted questions about all things bleeding disorders. Ask The Expert is created and produced by Believe Limited and hosted by Patrick James LynchListen and Subscribe!

  • Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your health care provider before making any decisions about treatment. 

The Powering Through Podcast features empowering, live panel conversations on obstacles, challenges, and what it takes to overcome, held for the benefit of the bleeding disorders community. The Powering Through Podcast is sponsored by NCHS, produced by Believe Limited, and hosted by Patrick James LynchListen and Subscribe!

BloodStream Media on Social:

Want to submit a question for Ask The Expert? Want to send in an idea for a segment on The BloodStream Podcast? Want to find out more about Powering Through events in your area? Email BloodStream: mailbag@bloodstreammedia.com.

Jan 16, 2017

In this episode, Patrick & Natalie review recent headlines of interest, introduce a patient perspective on life with sickle cell disease, discuss Believe Limited's upcoming documentary about hemophiliac mountaineer Chris Bombardier's summiting of Mount Everest, and discuss football, finance, and five tips toward improving money management during the Sit-Down segment with special guest Josh Gordy, NFL Super Bowl champion turned financial coach. All this and more on Episode 8 of BloodStream!

 

Sponsors for Episode 8:

Presenting Sponsor: Stop The Bleeding! (STB!). Link to STB! Website.

Supporting Sponsor: Shire. Link to BleedingDisorders.com.

 

Contact BloodStream:

Submit a question for our Ask The Expert series (premiering 1/30) by emailing mailbag@bloodstreampod.com.

 

Trending Topics:

Registration is now open for:

  • National Hemophilia Foundation (NHF) hosted Washington Days (March 8th-10th). Link
  • Hemophilia Federation of America’s (HFA) 2017 Symposium (April 6th-9th). Link
  • NHF’s 2017 Annual Meeting (August 24th-26th). Link

The FDA announces a Class 1 recall from Nurse Assist Inc of Normal Saline Flush syringes. Link

Steps-For-Living outlines Exercise and Activity Options for people with bleeding disorders. Link

NBC Nightly News catches up with “Iron Max.” Link

NHF survey seeking men with hemophilia age 50 or older. Link

 

Like Share Comment:    

Meditation may help alleviate chronic pain, study shows. Link

Meditation App: Headspace. Link

Delisa O’Brien’s tumblr on diet, health, and sickle cell disease. Link

Mt. Everest climb by severe hemophiliac Chris Bombardier is the subject of new Believe LTD documentary. Link

 

Sit-Down Segment with NFL Super Bowl Champion Josh Gordy

Josh Gordy’s Freedom Financial Coaching Website. Link

Freedom Financial Coaching Facebook Page. Link

Dave Ramsey Financial Coaching Website. Link

Josh on Twitter. Link

 

BloodStream on Social:

BloodStream Facebook Page

BloodStream Twitter Account

BloodStream Host Patrick James Lynch on Twitter and Instagram.

 

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

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