Best Haemophilia Podcasts (2024)

1
The way forward toward to justice 18:33

3h ago18:33

18:33

Do you want Charles to keep campaigning for Infected Blood Australia? If so please donate whatever you can afford here https://gofund.me/77abc074 A timeline of Charles's activism for infected blood https://www.infectedbloodaustralia.com/cm-timelineBy Charles MacKenzie

1
The multi-faceted role of HTC social workers 1:02:23

14h ago1:02:23

1:02:23

Patrick sits down with HTC social workers, Kathaleen Schnur and Dianne Bartlett, about the ever-evolving role of social workers in the HTC comprehensive care system. Plus, on the latest I’m Fine, Patrick answers the question, What do clotting factor levels mean to me in this new age of hemophilia treatment? Show Notes: Subscribe: The BloodStream Po…

1
Life with an Invisible Disorder 28:15

14d ago28:15

28:15

Patrick sits down with Thomas Bartlett, Myasthenia Gravis patient and advocate, about the unique struggles of living with an invisible chronic disorder. Also, we all know if you want real answers — ask a nurse. We’ve got Andrea Buxton, Nurse Practitioner at the Hemophilia Outreach Center in Green Bay, WI, with her account of the first commercial do…

1
Britain’s famous tabloid the Sun reports on Aussie world darts champion and infected blood campaigner Tony David! 34:49

23d ago34:49

34:49

DARTS STAR'S FIGHT Former darts world champion, 56, reveals doctors gave him six months to live after being injected with infected blood https://www.thesun.co.uk/sport/28206195/darts-legend-tony-david-infected-blood-scandal-deaths-door/ Was Australia’s health minister Mark Butler’s Elvis impersonation and ‘shaking of his ass’ a deliberate attempt a…

1
The verdict is manslaughter and billions in compensation for victims and their affected family members. 50:09

28d ago50:09

50:09

Australian infected blood victims call for royal commission in wake of damning UK inquiry findings https://www.9news.com.au/national/australian-infected-blood-victims-call-for-royal-commission-in-wake-of-damning-uk-inquiry-findings/450a262f-7b64-41fd-b6b2-aff1f4d96543 Aussie former darts world champion tells how infected donor blood almost killed h…

1
Mild Hemophilia Matters 56:20

1M ago56:20

56:20

Mild hemophilia truly does matter and we’re with Shellye Horowitz, formally with HFA, to hear about HFA’s Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and I’m Fine with Luke Pembroke. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I’m Fine and…

1
Banu Aygun on sickle cell anaemia 11:13

1M ago11:13

11:13

Professor Banu Aygun joins us to discuss the REACH trial testing hydroxyurea dose optimisation for children with sickle cell anaemia in sub-Saharan Africa. Read the full article: https://www.thelancet.com/journals/lanhae/article/PIIS2352-3026(24)00078-4?dgcid=buzzsprout_icw_podcast_generic_lanhae Continue this conversation on social! Follow us toda…

1
They turned Australia’s biggest serial killer into the face of Vegemite 1:00:55

2M ago1:00:55

1:00:55

In this edition, we expose the genocide of Australian medical patients with Haemophilia and how those responsible made fortunes and were even made into the face of Australia’s favourite spread Vegemite! Show links Children used as ‘human guinea pigs’ because it was cheaper than lab chimpanzees https://metro.co.uk/2024/05/13/blood-scandal-victims-us…

1
UK Blood Inquiry Clive Smith & Laurence Woollard 52:26

2M ago52:26

52:26

Our blood brother buds, Clive Smith & Laurence Woollard join us today to share the latest from the ongoing saga of UK Blood Inquiry, plus our latest Gene Therapy segment has Mason Buxton’s story (the first hemophilia B patient to be commercially dosed with gene therapy!). Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, vi…

1
Why I fought the greatest injustice in Australian medical history… 29:14

2M ago29:14

29:14

In this edition, Charles MacKenzie speaks of the high rate of women and children infected with HIV and the deadly virus Hepatitis C from contaminated blood treatments and tainted blood transfusions. Show links 'We lived a double life to hide my little boy's HIV' https://www.bbc.com/news/articles/c0x01284v5jo Help Charles MacKenzie keep surviving an…

1
Navigating the Currents: Interferons in the Treatment of Polycythemia Vera 25:45

2M ago25:45

25:45

On this special episode of the BloodStream Podcast, we explore interferons in the treatment of polycythemia vera (or PV). This episode is brought to you by PharmaEssentia. If you’d like to learn more about polycythemia vera, check out our sister show PV Pod: Stories from the Marrow (brought to you by BloodStream Media and PharmaEssentia). Connect w…

1
On the Shoulders of Giants is a hit (!) and I’m Fine is back 38:37

2M ago38:37

38:37

Hear about the premiere of the On the Shoulders of Giants film from HFA Symposium with Patrick and Amy. Plus the I’m Fine segment is back with Luke Pembroke and Hazri Aris is featured on the latest Elite Athletes segment. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. On the Sho…

1
Professor Amit Nathwani’s journey to create a one-shot cure for haemophilia A 23:59

3M ago23:59

23:59

To mark World Haemophilia Day, we sit down with Professor Amit Nathwani of the UCL Cancer Institute to explore his journey to commercialising the groundbreaking haemophilia A treatment, Roctavian. Host Nigel Campbell is joined by Prof Nathwani and Dr. Rick Fagan, UCLB Director of Biopharm, to explore how Amit’s work looking after patients with haem…

1
New NBDF CEO, Phil Gattone 38:55

3M ago38:55

38:55

We have newly appointed NBDF CEO, Phil Gattone with us sharing his background and his vision for the organization and community. And, we have the story of the first commercially dosed patient of hemophilia B gene therapy. Hear from Jamison Buxton, the father of the patient…who also happens to be the director of the HTC. Show Notes: Subscribe: The B…

1
The two imposters of the Infected Blood Scandal 45:49

3M ago45:49

45:49

In this edition, Charles MacKenzie exposes two of the main beneficiaries of Australia’s criminal coverup of the Infected Blood Scandal. Show links Bill Bowtell biography https://publishing.monash.edu/authors/bill-bowtell/ Bill Bowtell opened the ‘gates of hell’ and helped Bill Gates corrupt Australia’s health policy… https://www.smh.com.au/national…

1
Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Brikman 45:09

3M ago45:09

45:09

Dr. Glenn Pierce is with us to share what to expect from the upcoming WFH Congress in Madrid, and Amy sits down with President and CCEO of the Plasma Protein Therapeutics Association (PPTA), Anita Brikman. FLOW co-host Jessica Richmond sits in for Patrick and we’ll finish up with an Elite Athletes segments will feature bleeding disorder community m…

1
Ita Buttrose & the ABC Australia covered up the infected blood scandal 46:01

4M ago46:01

46:01

In this edition, Charles MacKenzie speaks about the retirement last week of Ita Buttrose as chair of the tax payer funded Australian Broadcasting Corporation (ABC) and reveals why Australians never got to find out about their nations deadliest medical scandal HIV & HepC contaminated blood. Show links Please help Charles keep surviving and fighting …

1
Highlights from ASH with Dr. Akshat Jain 44:04

4M ago44:04

44:04

We’re back with Dr. Akshat Jain who shares highlights in bleeding disorder research from ASH 2023, plus the differences between hemophilia A vs hemophilia B gene therapies with Dr. Mark Redding. We close out with our latest Elite Athletes segments featuring bleeding disorder community legend, Perry Parker. Don’t miss it! Show Notes: Subscribe: The …

1
Sabine Braat and Katherine Fielding on haemoglobin thresholds to define anaemia 18:06

4M ago18:06

18:06

Dr Sabine Braat and Dr Katherine Fielding join us to discuss their study presenting new haemoglobin thresholds for defining anaemia. Read the full article: https://www.thelancet.com/journals/lanhae/article/PIIS2352-3026(24)00030-9/fulltext?dgcid=buzzsprout_icw_podcast_generic_lanhae Continue this conversation on social! Follow us today at... https:…

1
Elisabeth Schorb on the MARTA phase 2 trial 9:23

4M ago9:23

9:23

Doctor Elisabeth Schorb joins us to discuss the MARTA phase 2 trial, treating older, fit patients with primary diffuse large B-cell CNS lymphoma with high-dose chemotherapy and autologous stem-cell transplantation. Read the full article: https://www.thelancet.com/journals/lanhae/article/PIIS2352-3026(23)00371-X/fulltext?dgcid=buzzsprout_icw_podcast…

1
HFA CEO Dan Kelsey and Rare Disease Day tribute 1:08:50

4M ago1:08:50

1:08:50

HFA CEO Dan Kelsey joins Patrick and Amy to respond to recent organizational changes, followed by Blood Brother, Carl Weixler, who shares a bit about HFA’s history, mission, and current state. Also, a tribute to Rare Disease Day, led by voices from BloodStream Media. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit b…

1
Positive Impact: A new generation of business with society at heart 35:55

5M ago35:55

35:55

This episode we explore Positive Impact. UCLB is helping to create a new generation of businesses from UCL academics specifically with positive societal impact at their heart. The commercialisation process can be a long road requiring financial, legal, and practical support. Nigel Campbell meets two inventors, Buffy Price Co-founder and COO of Carb…

1
NBDF welcomes new CEO; HFA responds 28:50

5M ago28:50

28:50

NBFD landed a new CEO, and HFA has responded to recent organizational changes; plus, we hear from Dr. Mark Reding and Dr. Steven Pipe about their excitement over gene therapy being added to the treatment landscape in hemophilia. We close with @theHemeNP, Maya Bloomberg talkin’ Rare Disease Day. Show Notes: Subscribe: The BloodStream Podcast Present…

1
Stephan Ehl on paediatric autoimmune lymphoproliferative immunodeficiencies 13:03

5M ago13:03

13:03

Professor Stephan Ehl joins us to discuss a prospective observational study on paediatric autoimmune lymphoproliferative immunodeficiencies. Read the full article: https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(23)00638-1/fulltext?dgcid=buzzsprout_icw_podcast_generic_lanonc Continue this conversation on social! Follow us today at..…

1
Preserving Tainted Blood History and Bath Bleeds 49:35

5M ago49:35

49:35

We’ve got a terrific interview with Kathy MacKay and Dana Kuhn about the efforts the Committee of Ten Thousand (COTT) is taking to preserve documents from the tainted blood tragedy. And another Elite Athletes segment featuring blood brother and cyclist, Giovanny Pernudi. Oh …and Patrick had a bath bleed. Show Notes: Subscribe: The BloodStream Podca…

1
Shakeup at HFA and a brand new Gene Therapy segment! 45:27

6M ago45:27

45:27

It’s a New Year and BloodStream is back with a terrific episode. Major changes at @HFA leave Patrick wondering about the future of one of our beloved national organizations and we have folks from the FAIR initiative and CHES to share their 2024 vision for the women in bleeding disorders movement (heck yeah!). Plus, a brand new segment this year on …

1
SNL screws up sickle cell. 40:35

6M ago40:35

40:35

We’ve got SNL screwups, the mainstream acronyms continue to butcher rare blood diseases. Plus, we’ve got a new ELITE ATHLETES segment with Anthony Pezzillo (who recently became an uncle; or expanded his uncledom) and I’m Fine, this time with a focus on the caregiver experience with Jessica Bombardier. We’ll get into it all, AND MORE, on this episod…

1
The Queen of the Haemophilia/Infected Blood coverup Sharon Caris retires. 20:02

6M ago20:02

20:02

Over the last twenty two years Sharon Caris the executive director of the Haemophilia Foundation Australia (HFA) was paid millions of dollars to coverup the genocide of Australian Haemophiliacs and to make sure care was denied survivors and their loved ones. Sharon Caris announced her retirement in November, possibly timed by her and the HFA wantin…

1
Dr Sarah O'Brien on the PREVAPIX-ALL trial 13:50

6M ago13:50

13:50

Dr Sarah O'Brien joins Lan-Lan Smith to discuss results of the phase 3 PREVAPIX-ALL trial, which compares direct oral anticoagulant apixaban to low-molecular-weight-heparin for the prevention of venous thromboembolism in children with newly diagnosed acute lymphoblastic leukaemia or lymphoma. Read the full article: https://www.thelancet.com/journal…

1
The World Health Organization (WHO) gets it wrong 33:41

7M ago33:41

33:41

The World Health Organization made a decision that has heads scratching that could seriously impact hemophilia patients across the globe and a new I’m Fine segment with blood brother, Justin Levesque. Plus, Worlds AIDS Day with Maya Bloomberg and Patrick is pain-free (or close to pain-free) for the first time in a long (!!) time. Show Notes: Subscr…

1
Enrico Lopriore on haemolytic disease of the fetus and newborn 12:33

7M ago12:33

12:33

Professor Enrico Lopriore joins us to discuss a trial testing darbepoetin alfa to prevent postnatal anaemia in infants with haemolytic disease of the fetus and newborn. Read the full article: https://www.thelancet.com/journals/lanhae/article/PIIS2352-3026(23)00285-5/fulltext?dgcid=buzzsprout_icw_podcast_generic_lanhae Continue this conversation on …

1
The Dark Side of Resilience + The Gratitude Game 44:10

7M ago44:10

44:10

Hear what Patrick and Amy are grateful for as we play The Gratitude Game, because ‘tis the season, y’all! Also, A new (and fantastic!) I’m Fine segment on the dark side of resilience and Ph.D. Olav Versloot on the latest Elite Athletes segment. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to…

1
The financial synergy between research commercialisation and the university 27:05

7M ago27:05

27:05

In this episode, Katy Bruce, CFO of UCL Business, and Charu Gorasia, CFO of UCL, will discuss the mutually beneficial relationship between the technology transfer office, such as UCLB, and the university. They will dive into the research income financial cycle and how the commercialisation income is distributed back into the research ecosystem. Thi…

1
Resisting Change and Holiday Dynamics 22:08

8M ago22:08

22:08

Amy turns the table on the latest I’m Fine and puts Patrick in the hot seat as he shares how and why he resists change and the effect that has on his loved ones. Plus, Maya Bloomberg, @thehemenp, is back with a segment on family dynamics and holiday logistics with a bleeding disorder. Check it out on the latest episode of BloodStream. Show Notes: S…

1
Introducing PNH: Facts, Fiction & FYI! 21:57

8M ago21:57

21:57

The BloodStream Podcast is off this week but we have something very special for you. Introducing PNH: Facts, Fiction & FYI. Dive deep into the critical history, medical background, and foundational insights of Paroxysmal Nocturnal Hemoglobinuria (PNH) in our inaugural episode. Join us as we set the stage for a comprehensive exploration of this rare…

1
Rugby & Hemophilia and Treatment Transitions w/ Mosi Williams 35:34

8M ago35:34

35:34

Mosi Williams, blood brother and social worker at an HTC in Northern California joins Patrick for the latest I’m Fine segment with a candid discussion about treatment transitions. And we have UK rugby player, Jess Page, who is living with hemophilia on our Elite Athletes with Hemophilia, the companion segment to the new film REDEFINING IMPOSSIBLE f…

1
Commercialising research: the collaboration between tech transfer and investment 30:12

9M ago30:12

30:12

In the tenth episode, Dr Anne Lane, CEO of UCLB and Dr Chris Hollowood, CEO of Syncona Investment Management, discussed the collaboration between their respective organisations in commercialising research. Syncona is a leading healthcare investment company focused on creating, building and scaling a portfolio of global leaders in life science; and …

1
Sexual Intimacy, Artificial Intelligence in Healthcare, and Mindset 55:29

9M ago55:29

55:29

We’re back with another episode of BloodStream featuring Maya Bloomberg’s 5 tips for sexual health with a bleeding disorder and AI in Healthcare with Kevin Mills and Pat Mancini. Plus a new SHEmophilia segment and a I’m Fine segment with Mark Skinner. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders…

1
Meletios Dimopoulos on relapsed and refractory multiple myeloma 11:00

9M ago11:00

11:00

Professor Meletios Dimopoulos joins us to discuss two trials for patients with relapsed and refractory multiple myeloma - the first report of the DREAMM-3 phase 3 and long-term follow-up of the APOLLO phase 3 trial. Read the full article: https://www.thelancet.com/journals/lanhae/article/PIIS2352-3026(23)00243-0/fulltext?dgcid=buzzsprout_icw_podcas…

1
Dr. Akshat Jain and NHL coach David Quinn 53:34

9M ago53:34

53:34

Dr. Akshat Jain, Director Inherited Bleeding Disorders at the Loma Linda University Children's Hospital, is here with a wide-ranging conversation, including gene therapy access and affordability in low resource areas. Plus, a new Elite Athletes segment featuring San Jose Sharks Head Coach, David Quinn and another installment of I’m Fine with a spot…

1
HeLP-Diabetes: From early-stage social venture to national roll-out 20:45

10M ago20:45

20:45

In the ninth episode of this podcast series, Ana Lemmo Charnalia, Senior Business Manager at UCLB, is in conversation with Orla O’Donnell , Divisional Manager at the UCL Div of Biosciences and former Chief Operating Officer of Health Digital CIC, a Community Interest Company incorporated in 2015 to commercialise HeLP-Diabetes. It is also an opportu…

1
Senceive Ltd: An organic growth success story 54:06

10M ago54:06

54:06

Over a 15 year journey, UCLB spinout company Senceive Ltd became the world leader in the design, manufacture and supply of wireless enabled remote condition monitoring solutions for use in rail and construction applications. Recognition of the innovative and scalable nature of Senceive’s solutions to keep people and critical infrastructure safe, le…

1
Embracing Change in Hemophilia Care and Back to School 31:58

10M ago31:58

31:58

Amy is with guest co-host Joshua Sterling Bragg with Back to School & Sickle Cell Awareness Month resources and a new I’m Fine segment about embracing change in hemophilia care. Plus Maya (@theHEMENP!) is back with thoughts on sports and fitness and author Tim Ryan join us! Show Notes: Subscribe: The BloodStream Podcast Back to School Resources at …

1
Eric Ohuma on haemoglobin concentrations and neonatal outcomes 16:27

10M ago16:27

16:27

Dr Eric Ohuma joins us to tell us about a study recently published in The Lancet Haematology on the association between maternal haemoglobin concentrations and maternal and neonatal outcomes. Read the full article: https://www.thelancet.com/journals/lanhae/article/PIIS2352-3026(23)00170-9/fulltext?dgcid=buzzsprout_icw_podcast_generic_lanhae Continu…

1
Patrick and Amy’s BDC Recap! 36:14

10M ago36:14

36:14

Patrick and Amy recap all the happenings at the recent Bleeding Disorder Conference in DC live from The Science Fair! We’ll discuss the rebrand to The National Bleeding Disorder Foundation (NBDF) and several sessions that caused interest, including two gene therapy patients with wildly different experiences. Also, we’ll premiere the first Elite Ath…

1
Taylor Swift changes Amy’s life, plus a new segment, and other stuff. 27:25

11M ago27:25

27:25

Don’t worry, Amy was given only 3 minutes to share her experience of The Eras Tour and then we get to the good stuff! Maya Bloomberg, the @TheHemeNP, shares four specific pillars of successful disclosure and we debut our new segment, I’m Fine. This new segment aims to challenge our “normals” and truly consider the possibilities. Show Notes: Subscri…

1
Margaret Ragni on tranexamic acid to treat heavy menstrual bleeding 13:13

11M ago13:13

13:13

Professor Margaret Ragni joins us to discuss the VWDMin study, published in The Lancet Haematology. In this phase 3, randomised, crossover trial, recombinant von Willebrand factor and tranexamic acid are used to treat heavy menstrual bleeding in patients with mild and moderate von Willebrand disease in the USA. Read the full article: https://www.th…

1
NHF rebrand w/ Len Valentino & SHEmophilia w/ Priscilla Oren 35:48

11M ago35:48

35:48

The National Hemophilia Foundation has a major rebrand coming up and we spoke with outgoing CEO and President Len Valentino about that AND SHEmophilia is back with a story from community member Priscilla Oren. We also share some important Medicaid information - don’t miss this one! Show Notes: Subscribe: The BloodStream Podcast You can do three pra…

1
Project Management for Technology Transfer 29:31

12M ago29:31

29:31

In the seventh episode of this podcast series, Jessica Bolton-Murray, Head of Project Management at UCLB, is in conversation with Tanel Ozdemir, Investment Manager for the UCL Technology Fund. The Project Management team at UCLB provides support and direction to any number of project at UCLB, working towards a commercial endpoint. The team have bee…

1
It’s here: Gene Therapy for Hemophilia A 44:09

12M ago44:09

44:09

Patrick calls in to discuss the first gene therapy for Hemophilia A approved in the United States, while Amy chats with Chris Bombardier and Dru Johnston about season 2 of The Final Summit and Maya Bloomberg shares 5 Tips for a Safe and Fun summer with a bleeding disorders. Show Notes: Subscribe: The BloodStream Podcast Listen to The Final Summit S…

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