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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: Category: general
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

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Apr 16, 2018

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

Exclusive Sponsor: Shire

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

Share Segment: Maryann May - #ibleedtoo 

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

Interview Segment: Eyewitness To Destruction from LA Kelley Communications

Community News in 60 Seconds:

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

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

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

Precision Develops Better Way of Detecting Levels of Clotting Factor Inhibitors

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

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

New Method May Improve Delivery of Targeted Gene Therapies   

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

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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

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

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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

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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

 

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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