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Best Vonwillebranddisease podcasts we could find (Updated October 2019)
Related podcasts: Fitness Alternative Health Healthcare Self-Improvement Hematologic Bleedingdisorders Hemophilia Htcs Inheritedblooddisorders Vwd Patrickjameslynch Believe Limited
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Ask The Expert from BloodStream Media is a podcast series features hematologists and other healthcare experts answering listener-submitted questions about hemophilia, von willebrand disease, and other inherited bleeding disorders. Learn more at BloodStreamMedia.com. The content contained within Ask The Expert is for informational purposes only. Please consult your health care provider before making any decisions about treatment.
 
T​he Powering Through Podcast features live panel conversation on obstacles and challenges faced by people affected by hemophilia, von Willebrand disease, and other bleeding disorders. The nationwide series features members of the bleeding disorders community as well as inspiring friends. Both the live events and the podcast are hosted by community member Patrick James Lynch. Find more Powering Through podcasts by visiting PoweringThrough.org/podcast. Powering Through and The Powering Throug ...
 
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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 conversat ...…
 
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 Mich ...…
 
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 activ ...…
 
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 w ...…
 
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 ...…
 
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 ...…
 
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 gu ...…
 
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 cost ...…
 
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 developin ...…
 
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 guid ...…
 
In this episode, we give a listen to our Powering Through event held during Gateway Hemophilia Associations’ Annual Meeting. Our participants were community members Kim King and David Clark, as well as “Daughters of Sick Parents” Blog founder Chelsea Lloyd and our Powering Through panel host, Patrick James Lynch. Listen to their perspectives on ...…
 
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 “Bloo ...…
 
In this episode, we give a listen to our Powering Through event held during the National Hemophilia Foundation, Colorado Chapter’s Education Days. Our participants were community members Cathy Bombardier and Seth Rojhani, as well as paralympic athlete Lacey Jay Henderson and our Powering Through panel host, Patrick James Lynch. Listen to their ...…
 
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 h ...…
 
In this episode, we give a listen to our Powering Through event held during the Hemophilia Foundation of Northern California's Family Education Day. Our participants were community members Lauren Barbounis (hemo mom) and Ben Martin (community advocate), professional athlete Jeremy Dodson (living with hydrocephalus) and the host of the Powering ...…
 
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 ...…
 
In this episode, we give a listen to our Powering Through event held during the New England Hemophilia Association’s FallFest. Our participants for this panel were professionals from the healthcare industry, Dr. Jonathan Bernstein (Connecticut Children’s Medical Center), Dr. Stacy Croteau (Boston Children’s Hospital), Emily Bisson (Yale Hemophi ...…
 
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 appro ...…
 
In this episode, we give a listen to our Powering Through event with the Idaho Chapter of the National Hemophilia Foundation. Our participants on this panel were community members Preston Bowling (living with hemophilia A), Allie Cashel (author of “Suffering the Silence”) and Skyler Openshaw (living with hemophilia), and the host of the Powerin ...…
 
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 Bomba ...…
 
In this episode, we give a listen to our Powering Through event held during the Florida Hemophilia Association’s Annual Family Education Symposium in West Palm Beach. Our participants on this panel were community members Lilliam Bervis (living with vWD), Allie Cashel (living with Lyme Disease) and Bobby Monahan (living with hemophilia), and the ...…
 
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 ...…
 
In this episode, we give a listen to our Powering Through event held during the Hemophilia of Indiana’s Annual Meeting. Our community participants were Vanessa and Jason Flora (hemo parents), Heather Stephenson (childhood friend of Ryan White) served as our guest participant, and the host of the Powering Through panel is Patrick James Lynch. Li ...…
 
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 Hemoph ...…
 
In this episode, we give a listen to our Powering Through event held during the Hemophilia Association of New York's Family Education Conference. Our participants were community members Linda Mugford (living with diabetes), Liz Cedeno (hemo mom) and Chris Bombardier (mountaineer with hemophilia) and the host of the Powering Through panel is Pat ...…
 
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 ...…
 
In this episode, we give a listen to our Powering Through event held as part of the Eastern Pennsylvania Chapter of NHF’s ‘Adventures in Learning’ Program. Our participants on this panel were community members Devin Kress (living with hemophilia) and Kelly Kimmel (living with vWD, filmmaker Naomi McDougall Jones, and the host of the Powering Th ...…
 
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 ...…
 
In this episode, we give a listen to our Powering Through event held during the Bleeding Disorders Association of Northeastern New York’s Annual Meeting at Six Flags Great Escape Lodge in Queensbury, NY . Our participants were community members Jeff Bostwick (local board member), Chris Huskie (former HH camper and counselor) and Christina Mastr ...…
 
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 Pezzill ...…
 
In this episode, we give a listen to our second-ever Powering Through event held in New York City, which features renowned HIV/AIDS and hemophilia advocate Jeanne White-Ginder. Listen to her powerfully unique perspective on obstacles, challenges, and what it takes to overcome here on Episode 13 of The Powering Through Podcast. NCHS (National Co ...…
 
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 inhibit ...…
 
In this episode, we give a listen to our Powering Through event held during National Hemophilia Foundation’s 2017 Annual Meeting in Chicago, Illinois. Our participants for this young adult panel included community members Elijah Nobles (living w/ hemophilia B), Cheyenne Gansell (living w/ vWD), and Jimi Olgahere (living w/ sickle cell disease). ...…
 
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 ...…
 
In this episode, we give a listen to our Powering Through event held during Hemophilia of Iowa’s Annual Meeting. Our participants for this were community members Kari Atkinson (parent and former HOI Board President), Brody Nolte (teen athlete with hemophilia), and Chris Bombardier (mountaineer with hemophilia). Listen to their perspectives on o ...…
 
“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 ...…
 
In this episode, we give a listen to our Powering Through event held at the keynote event during the Bleeding Disorders Alliance of Illinois' Family Education Weekend in Naperville, Illinois this Spring. Our participants for this were community members Ann McIntosh (mother of child with VWD), Nichelle Stigger (mother of child with Hemophilia), ...…
 
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 a ...…
 
In this episode, we give a listen to our Powering Through event held on December 1st, 2016 as part of the World AIDS Day ceremony hosted at The National AIDS Memorial Grove in San Francisco, California. Our panel included Carl Weixler, the President of the Committee of Ten Thousand (COTT), Kimberly Haugstad, the President and CEO of the Hemophi ...…
 
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 o ...…
 
In this episode, NFL Super Bowl Champion Josh Gordy and DEA agent Justin Mohr (from “DEA Detroit”) share their perspectives on obstacles, challenges, and what it takes to overcome during our Powering Through discussion held at the Texas Bleeding Disorders Conference in August, 2017. The wide-ranging conversation touches on managing the loss of ...…
 
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 acti ...…
 
On this episode, four hemophilia treatment center (HTC) hematologists discuss recent trends and updates on topics such as the treatment of women with bleeding disorders, insurance challenges; chronic pain management, aging with hemophilia, the complex challenges of treating a multicultural community, updates on treatment products for patients w ...…
 
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 ...…
 
Held during Hemophilia Federation of America's Annual Symposium in Las Vegas, NV, Powering Through 12 was a conversation on sports with bleeding disorders and how to push past personal boundaries, both physical and mental. Hosted by actor/producer and community member Patrick James Lynch, our guest speakers for this event were: - Josh Gordy, NF ...…
 
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 cou ...…
 
Powering Through returned to Southern California! Recorded at The York Manor in the Historic Highland Park neighborhood of Los Angeles, Powering Through SoCal 2 was a conversation on hemophilia & turning a personal challenge into a career with speakers Shawn Whelan, medical student living with Hemophilia, Greg Edwards, Actor and Comedian & Mari ...…
 
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 bleed ...…
 
In this episode, mountaineer Chris Bombardier and high schooler Justin Senger describe the challenges hemophilia has posed in their lives respective lives, while Missouri-native Kelle Geringer shares openly about suddenly losing her husband just after he returned from serving overseas. Held for the benefit of the teens at Gateway Hemophilia Ass ...…
 
Powering Through was excited to return for our third installment in NYC for a conversation on community and how we can all help each other to pick ourselves up from rock bottom. Hosted by actor/producer and community member Patrick James Lynch, our guest speakers for this event were NYCHC board president and community mom Wendy Chou, NYCHC boar ...…
 
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