Los mejores podcasts de Inheritedblooddisorders (2024)

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Ep 40 - TO THE FUTURE w/ Patrick James Lynch 55:51

4+ y ago55:51

55:51

Our guest for this month is Believe Limited CEO and Bloodstream host, Patrick James Lynch. Ask the Expert is headed in a new direction and Patrick joins us to share what the future will hold for the Bloodstream Media network. Even though this will be the final episode of Ask the Expert, we are excited to announce the new path for our expert intervi…

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Ep. 39 - w/ Dr. Len Valentino (Part 2) - Get to Know the Expert 22:20

4+ y ago22:20

22:20

Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO the National Hemophilia Foundation, Dr. Len Valentino! We’ll learn how Dr. Valentino got his start, what lessons he learned…

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Ep. 39 - w/ Dr. Len Valentino (Part 1) - Become an Expert 32:41

4+ y ago32:41

32:41

The National Hemophilia Foundation announced new leadership in Dr. Len Valentino weeks before the COVID-19 outbreak and his unique position to guide our community during this unprecedented time has been welcome. Dr. Valentino joins us on Ask the Expert this month to share a bit of his story and his thoughts on the pandemic could affect the bleeding…

1
ATE - Ep. 38 - w/ Sharon Meyers (Part 2) - Get to Know the Expert 20:17

4+ y ago20:17

20:17

Join us for our “Get to Know the Expert” episode of Ask the Expert! Having the opportunity to know our national leaders in a personal way is an honor and a treat for any community. Join us on today’s episode to get to know CEO of Hemophilia Federation of America (HFA), Sharon Meyers, as she begins her tenure at the organization. Sharon shares how s…

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ATE - Ep. 38 - w/ Sharon Meyers, HFA (Part 1) - Become an Expert 37:58

4+ y ago37:58

37:58

During this period of unprecedented turmoil and uncertainty, the bleeding disorder community has found comfort in the Hemophilia Federation of America’s (HFA) messaging and voice. Newly-minted CEO of HFA, Sharon Meyers, joins us to share the behind the scenes work HFA has done to prepare statements, resources, and education during the COVID pandemi…

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ATE - Ep. 37 - w/ Brian Ragaishis (Part 2) - Get to Know the Expert 19:34

4+ y ago19:34

19:34

Join us for our “Get to Know the Expert” episode featuring Brian Ragaishis! Brian is a teenager with vWD who created the website Live Smart, Play Smart, a community where other teens affected by bleeding disorders can share their story. In today’s episode, we hear about what it was like for Brian when he was diagnosed with vWD and how he felt isola…

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ATE - Ep. 37 - w/ Brian Ragaishis- Live Smart, Play Smart 24:15

4+ y ago24:15

24:15

So much of our community programming and education is focused around teenagers and yet oftentimes our teenagers seem like mysteries to us. What is it like being a teen with a bleeding disorder and what would make their lives easier? To celebrate Bleeding Disorders Awareness Month we asked teen, Brian Ragaishis, to join us on Ask the Expert to share…

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ATE - Ep. 36 - w/ Dr. Jonathan Roberts (Part 2) - Get to Know the Expert 19:44

4+ y ago19:44

19:44

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ATE - Ep. 36 - w/ Dr. Jonathan Roberts (Part 1) 30:21

4+ y ago30:21

30:21

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Ep. 35: New Year’s Resolutions Watch-Outs - w/Debbie de la Riva 43:14

5y ago43:14

43:14

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Ep. 34: vWD Research Update - w/ Dr. Christopher Ng, M.D. 59:20

5y ago59:20

59:20

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Ep. 33: Paradigm Shift in Hemophilia Treatment w/ - Dr. Michael Wang, M.D. 52:42

5y ago52:42

52:42

As we enter into a new phase of hemophilia treatments and products, the questions continue to grow and become more complicated by the day. Check out the latest episode of Ask the Expert, where we welcome Dr. Michael Wang, M.D. from the University of Colorado Hemophilia and Thrombosis center to discuss the current status of revolutionary potential t…

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Ep. 32: Surprise Billing 101 w/ Miriam Goldstein and Sonji Wilkes - October 28, 2019 56:54

5y ago56:54

56:54

Imagine doing your due diligence for an upcoming medical procedure by double checking your facility and providers are in-network with your insurance plan, only to later find out that a provider treating you (e.g., an anesthesiologist or radiologist) does not participate in your health plan’s network after you receive a huge out-of-network bill out …

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Ep. 31: MyBDC w/ Michelle Witkop and Maria Santaella - September 23, 2019 1:03:48

5y ago1:03:48

1:03:48

As a member of the rare disease community, bleeding disorder patients and their families are used to taking surveys, signing up for clinical trials, and/or sharing our thoughts about what it is like living with a bleeding disorder. So what makes this new initiative from the National Hemophilia Foundation (NHF) different? Join us for a conversation …

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Ep. 30: Hemophilia Foundation of Michigan - Camp Bold Eagle Team - August 26, 2019 1:01:33

5y ago1:01:33

1:01:33

Hemophilia Foundation of Michigan’s Camp Bold Eagle is turning 50 this year! Camp Bold Eagle is the longest running summer camp for kids and teens with bleeding disorders in the United States and to celebrate this incredible accomplishment and to relish in the joy of summer camp, Ask the Expert invited staff of the Hemophilia Foundation of Michigan…

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Ep. 29: Does Treatment Adherence Mean Healthy Joints? w/ - Cindy Bailey, Ph.D - July 22, 2019 50:03

5+ y ago50:03

50:03

Is a healthy joint an active joint or a stagnant joint? How many bleeds does it take to create damage? How does treatment adherence compliment our activity levels and joint health? Join us for the latest episode of Ask the Expert where nationally recognized physical therapist, Cindy Bailey, Ph.D, gives us the 101 on joint health, physical activity,…

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Ep. 28: Gender Bias in Healthcare w/ - Christie VanHorne - June 24, 2019 56:25

5+ y ago56:25

56:25

Did you know that women are twice as likely as men to be diagnosed with a mental health condition when presenting cardiovascular symptoms? Or that, on average, it takes women ten years to be diagnosed with endometriosis? On the latest episode of Ask the Expert, we dive into this topic and the long history of women feeling dismissed or ignored when …

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Ep. 27: Creator and Founder of "Parents Empowering Parents" - Danna Merritt - May 27, 2019 1:27:43

5+ y ago1:27:43

1:27:43

The latest episode of Ask the Expert features a conversation with Danna Merritt, a chronic disease social worker with over 50 years experience counseling parents of a child with a serious medical condition. Danna is creator and founder of Parents Empowering Parents (PEP), a decades long parenting program for the bleeding disorder community and Ener…

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Ep. 26: Value of Board Services w/ Jorge de la Riva - April 22, 2019 42:36

5+ y ago42:36

42:36

Are you considering board service with your local chapter or a national organization? Maybe you are currently serving on a board and know the unique struggle this volunteer position can face. Join us for a special Ask the Expert episode as we sit down with Jorge de la Riva, former board chair of The National Hemophilia Foundation. Jorge shares his …

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Ep. 25: Do Our Stories Actually Matter w/Bruce Barnum - March 25, 2019 48:40

5+ y ago48:40

48:40

Ever wonder what happens after you meet with a legislator and their staff? Ever wonder what they do with your courageous, compelling stories? Can you actually affect policy changes by advocating? Do your stories even matter? Join us for a special episode of Ask the Expert as we pull back the curtain on the legislative process! This month our guest …

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Ep. 24: Copay Accumulator Adjustment Programs Episode w/ Kollet Koulianos - February 25, 2019 1:10:34

5+ y ago1:10:34

1:10:34

Do you use copay cards to access your clotting factor? What if those cards were used by your insurance company but didn’t go towards your deductible or out-of-pocket max so you end up with a huge bill for your factor? This is called Copay Accumulator Adjustment Programs and they are the latest insurance tactic to control overall healthcare costs an…

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Ep. 23: Global Health w/ Chris Bombardier - January 28, 2019 34:20

6y ago34:20

34:20

New Ask the Expert host, Amy Board, sits down with previous ATE host Chris Bombardier! We ask Chris about his next adventure as the executive director of Save One Life and the future of the organization. Save One Life is a global non-profit founded by Laurie Kelley serving individuals and families affected by bleeding disorders in the developing wo…

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Ep. 22: Travel w/ Donnie Akers - December 24, 2018 51:03

6y ago51:03

51:03

This month on Ask the Expert, community advocate Donnie Akers joins Chris to discuss the in’s and out’s of traveling with your bleeding disorder, such as navigating the airport with your medication, what rights you have as a person with mobility challenges and where to go if you run into trouble while on a trip. All that, plus- MASAC’s new guidelin…

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Ep. 21: The Importance of Art - w/ Justin Levesque - November 26, 2018 44:50

6y ago44:50

44:50

In this episode of the Ask The Expert podcast, we interview Justin Levesque about the influence his bleeding disorder has had on his work as an artist, discuss how art can be used to express the challenges we face living with a bleeding disorder and how that unique experience can lead to powerful artwork. Justin also discusses his program “Blood Wo…

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Ep. 20: Women with Bleeding Disorders - w/ Tammy Davenport - October 29, 2018 35:24

6y ago35:24

35:24

Imagine having all the symptoms, and even the diagnosis of hemophilia, but you constantly hear that it’s impossible for you to have the condition. You undergo surgery without having factor available, suffer from bleeds and are placed in life-threatening situations, despite the fact that your factor levels have consistently shown that you have hemop…

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Ep. 19: The Model Volunteer - w/ Maryann May - September 24, 2018 29:15

6y ago29:15

29:15

Non-profit organizations couldn’t function without the critical work of VOLUNTEERS. Whether on the national or local level, volunteers help communities CONNECT. Volunteers serve on boards of directors, chair committees to organize fundraisers and events, stuff mailers to potential donors, and even set up tables and chairs for events. They do it all…

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Ep. 18: Career Counselor Episode - w/ Don Molter - August 27, 2018 38:45

6y ago38:45

38:45

Summer is already coming to a close and for many families that means their kids are heading back to school or off to college. It’s an exciting time, but what if you aren’t ready for college or you don’t feel like that’s the right path for you? How do you go about finding a career that fits your life with a bleeding disorder and how do you approach …

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Ep. 17: Mental Health - w/ Debbie de la Riva - July 23, 2018 1:04:43

6+ y ago1:04:43

1:04:43

Mental illness in the bleeding disorders community is a challenging topic to discuss, but given that approximately one-third of people with a chronic illness experience symptoms of depression, it’s clearly a topic in need of more attention. This month’s guest is Debbie de le Riva, community advocate and social worker. She joins host Chris Bombardie…

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Ep. 16: Nutrition - w/ Tracy Mann - June 25, 2018 31:54

6+ y ago31:54

31:54

One of the easiest ways to keep our bodies healthy on a day to day basis is by eating well, but it’s also one of the hardest commitments to make. After a long hard day of work or school, it’s so easy to swing into a fast food restaurant or pop in a frozen pizza, even when we know we should go for something healthier. On today's podcast we will be e…

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Ep. 15: Adoption - w/ Shari Luckey - May 28, 2018 34:46

6+ y ago34:46

34:46

In many developing countries, children that are born with chronic medical conditions are placed in orphanages. With limited hope for care in these situations one of the best hopes for these children is to be adopted. In this month’s Ask The Expert episode, we visit with Shari Luckey, the Adoption Advocacy and Outreach Coordinator for the Hemophilia…

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Ep. 14: Physical Therapy Episode - w/ Sharon Funk - April 22, 2018 44:00

6+ y ago44:00

44:00

There are many different healthcare providers that make up the the comprehensive care model at hemophilia treatment centers around the United States and much of the developed world. Physicians, nurses, social workers, physical therapists and many other healthcare professionals are all crucial team members in this model and can help individuals thro…

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Ep. 13: Gene Therapy Episode - w/ Dr. Marilyn Manco-Johnson - March 26, 2018 31:17

6+ y ago31:17

31:17

The concept of gene therapy has been floating around the hemophilia community for decades, but with recent success in clinical trials, we appear to be getting closer to having an FDA approved treatment. In this episode, we focus on understanding terminology and types of gene therapy, potential benefits and pitfalls, and the role of factor in a gene…

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Ep. 12: Community Advocates - w/ Rich Pezzillo - February 26, 2018 37:38

6+ y ago37:38

37:38

Advocacy has long been a hot topic in the bleeding disorders community, but beyond office visits with state and federal legislators, what does it actually entail? If you have ever wondered about how you can become or grow as an advocate, this episode is for you! In this month’s episode of the Ask The Expert Podcast we catch up with Rich Pezzillo, E…

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Ep. 11: Inhibitors and New Therapies - w/ Dr. Guy Young - January 22, 2018 44:28

7y ago44:28

44:28

The management of inhibitors continues to be one of the greatest challenges facing researchers, clinicians, and patients with hemophilia. Thankfully we seem to have taken a giant step forward vis-a-vie the introduction of Hemlibra, the first and only subcutaneous treatment option for patients of all ages who have severe hemophilia A and inhibitors.…

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Ep. 10: Across The Globe - w/ Laurie Kelley - December 25, 2017 41:21

7y ago41:21

41:21

For the last 27 years, Laurie Kelley has dedicated herself to educating and improving the lives of families impacted by hemophilia, hemophilia and inhibitors, and von willebrand disease, both here in the United States and internationally throughout the developing world. So as we say goodbye to 2017 and hello to 2018, what are some of the major cons…

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Ep. 9: The Great Outdoors- w/ Pat Torrey - November 27, 2017 37:17

7y ago37:17

37:17

“I can’t do that.” “That’s not for me.” “I’m not able to do that.” Thinking about the outdoors and outdoor activities can be intimidating for people living with a bleeding disorder. But should they be? Are the outdoors and experiential education in the outdoors really off-limits to people with bleeding disorders? That’s what we’re here discuss with…

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Ep. 8: Preparing for the Holidays - w/ Eric Iglewski - October 23, 2017 31:42

7y ago31:42

31:42

Food, family, food, travel, more food, money, more food still- the holidays can be a really stressful time! On this episode, social worker Eric Iglewski from the Mary M. Gooley Hemophilia Center in Rochester, New York joins Ask The Expert to talk through important considerations for people with bleeding disorders to keep in mind as we rapidly appro…

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Ep. 7: Aging with Hemophilia- w/ Randy Curtis - September 25, 2017 22:13

7y ago22:13

22:13

In this episode Randy Curtis, the Hemophilia Council of California’s Board President and longtime community activist, joins Ask The Expert to answer questions on aging with hemophilia, and the how he and peers in the Baby Boomer and Generation-X populations view this historic point in treatment history. We address that, and more, on Episode 7 of Bl…

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Ep. 6: Back to School - w/ Carrie Koenig - August 28, 2017 37:24

7y ago37:24

37:24

In this episode Carrie Koenig, the Hemophilia Federation of America’s (HFA) Families Program Manager, identifies the most important considerations for parents and families preparing for back-to-school season. What should parents of children with bleeding disorders be thinking about? What resources are available to help parents prepare? How active s…

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Ep. 5: ISTH Recap - w/ Dr. Steven Pipe - July 24, 2017 38:07

7+ y ago38:07

38:07

In this episode, Dr. Steven Pipe, a pediatric hematologist out of the University of Michigan who is also the chair of the National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) discusses the major takeaways from the International Society of Thrombosis and Hemostasis’ (ISTH) 2017 Congress, which took place this July in Berl…

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Ep. 4: Healthcare Legislation and Advocacy - w/ Katie Verb - June 27, 2017 36:21

7+ y ago36:21

36:21

In this episode, Katie Verb, the Director of Policy and Government Relations for the Hemophilia Federation of America, answers questions on health care legislation, advocacy, and the extraordinarily-troubling Better Care Reconciliation Act (BCRA) that has been drafted by Senate Republicans in an unprecedented and lightning-fast manner. What could t…

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Ep. 3: Women with Bleeding Disorders - w/ Dr. Robert Sidonio - May 22, 2017 41:11

7+ y ago41:11

41:11

In this episode Dr. Robert Sidonio, an Assistant Clinical Professor of Pediatrics at Emory University Hospital and the Clinical Director of Hemostasis/Thrombosis at the Children’s Hospital of Atlanta, answers questions on and about women with bleeding disorders. Dr. Sidonio is a leading expert in the treatment and management of women with bleeding …

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Ep. 2: Questions for your Pediatric Hematologist Part 2 - w/ Dr. Arash Mahajerin - February 27, 2017 40:29

7+ y ago40:29

40:29

In this episode, pediatric hematologist Dr. Arash Mahajerin is back to answer listener-submitted questions on the future of portacaths for kids with hemophilia, what to do when mysterious bruising or joint pain begins to show, and marijuana- is it a legitimate form of medication, or not? His answers to those questions, and more, on Episode 2 of Blo…

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Ep. 1: Questions for your Pediatric Hematologist - w/ Dr. Arash Mahajerin - January 30th, 2017 37:03

8y ago37:03

37:03

In this - our first! - episode, Dr. Arash Mahajerin, a pediatric hematologist at the Children's Hospital of Orange County (California) and Assistant Clinical Professor at the University of California, Irvine, answers listener-submitted questions about all things bleeding disorders in the first episode of BloodStream Media's Ask The Expert podcast s…

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