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Ask The Expert - A BloodStream Media Podcast

Ask The Expert from BloodStream Media is a podcast series features hematologists and other healthcare experts answering listen-submitted questions about hemophilia, von willebrand disease, and other inherited bleeding disorders. Learn more at BloodStreamMedia.com.
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Ask The Expert - A BloodStream Media Podcast
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Apr 22, 2019

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 personal views of the role of a board member and how serving your community in this way can be rewarding for you and your family. “The best way to find yourself is to lose yourself in the service of others” - Gandhi.

Welcome to Episode 26 - or our The Value of Board Service Episode - of the Ask The Expert Podcast!  

 

Follow the link below for continued resources on board service:

https://boardsource.org/ 

 

  • “The best thing a new board member can do is listen.”

  • “The Board Chair/President is there to serve the community and staff, while execited the will of the board.”

  • “A solid working relationship between the CEO/executive director and the board chair is based on aligned values, transparency and clear directives from the board.”

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Mar 25, 2019

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 is Bruce Barnum, a former staffer to Senator Al Franken. Bruce gives a glimpse of what it is like working for a congressional office, the importance of telling your story and how policy is informed by YOU! This is your chance to see that your voices truly matter. A can’t miss episode of Ask the Expert!

Welcome to Episode 25 - or our Do Our Stories Actually Matter Episode - of the Ask The Expert Podcast!  

 

Follow the link below to find out who represents you in Congress: https://whoismyrepresentative.com/

 

Additional Resources: To find contact information for your local district offices, go to your member’s website and find what office is closest to your home. Ask to meet with the member when they are back in town. Make sure to tell the staff what you’d like to discuss and have a flexible time-frame for the best chance of getting a meeting.  

Follow the links below to see NHF and HFA’s policy positions:

https://www.hemophilia.org/Advocacy-Healthcare-Coverage/Advocacy-Priorities

https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/policy-priorities/

 

Feb 25, 2019

 

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 and could mean surprise bills for bleeding disorder patients. Our episode is with Kollet Koulianos, senior director of payer relations for The National Hemophilia Foundation, an expert on these programs. Join us as we walk through the mechanics of this issue, hear a patient’s story of dealing with this issue firsthand and how to advocate for yourself if you find yourself in this situation. A can’t miss episode of Ask the Expert!

 

Welcome to Episode 24 - or our Copay Accumulator Adjustment Program Episode - of the Ask The Expert Podcast!  

 

Follow the link below to watch a video from the National Hemophilia Foundation on Copay Accumulator Adjustment Programs:

https://www.hemophilia.org/Newsroom/Advocacy-Legislative-News/Copay-Accumulator-Adjustments-What-are-they-and-how-they-can-affect-you

  

Follow the link below to read about specific data about copay accumulator benefit structures:

https://www.drugchannels.net/2018/09/copay-accumulator-update-widespread.html

 

Follow the link below for more information about copay accumulator adjustment programs:

https://www.latimes.com/business/lazarus/la-fi-lazarus-healthcare-copay-accumulators-20180427-story.html

 

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 and could mean surprise bills for bleeding disorder patients. Our episode is with Kollet Koulianos, senior director of payer relations for The National Hemophilia Foundation, an expert on these programs. Join us as we walk through the mechanics of this issue, hear a patient’s story of dealing with this issue firsthand and how to advocate for yourself if you find yourself in this situation. A can’t miss episode of Ask the Expert!

 

Welcome to Episode 24 - or our Copay Accumulator Adjustment Program Episode - of the Ask The Expert Podcast!  

 Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Follow the link below to watch a video from the National Hemophilia Foundation on Copay Accumulator Adjustment Programs:

https://www.hemophilia.org/Newsroom/Advocacy-Legislative-News/Copay-Accumulator-Adjustments-What-are-they-and-how-they-can-affect-you

  

Follow the link below to read about specific data about copay accumulator benefit structures:

https://www.drugchannels.net/2018/09/copay-accumulator-update-widespread.html

 

Follow the link below for more information about copay accumulator adjustment programs:

https://www.latimes.com/business/lazarus/la-fi-lazarus-healthcare-copay-accumulators-20180427-story.html

 

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

 

 

Jan 28, 2019

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 world. Join us for a conversation with Chris as he explains the current realities of having a bleeding disorder in the developing world and what we can do to help and bring awareness.

Welcome to Episode 23 - or our Chris Bombardier’s Next Adventure Episode - of the Ask The Expert Podcast!

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Follow the link below to sponsor a child with hemophilia across the globe:

https://saveonelife.net/sponsorship

Follow the link below to contribute to Save One Life’s scholarship program:

https://saveonelife.net/help-a-student-pay-for-college

Follow the link below to contribute to a family in the developing world start a business:

https://saveonelife.net/help-a-family-start-a-business

Follow the link below to send a child in the developing world to camp:

https://saveonelife.net/product/help-a-child-go-to-camp

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Dec 24, 2018

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 guidelines that are incredibly important for you to know, pertaining to your rights as a person with a bleeding disorder in the emergency room- and more, on episode 22 of the Ask the Expert podcast!

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

MASAC’s Guidelines for Emergency Department Management of Individuals with Hemophilia and Other Bleeding Disorders

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Nov 26, 2018

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 Work”, an art exhibition of pieces created by individuals impacted by bleeding disorders at the National Hemophilia Foundation’s Annual Bleeding Disorders Conference.

 

Follow Justin:

One Dynamic System

https://onedynamicsystem.com/

Instagram

@onedynamicsystem

 

Follow FOLX and enter your work into the next Blood Work exhibit here:

https://www.folxfolx.org/

 

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Oct 29, 2018

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 hemophilia. While this sounds like an outrageous scenario, most women with hemophilia have lived this exact same story. On our “Women with Bleeding Disorders” episode of the Ask the Expert Podcast, we dive into the challenges faced by women living with bleeding disorders and their struggle to receive a proper diagnosis and treatment, with our guest expert Tammy Davenport.

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Sep 24, 2018

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! That’s why the mighty VOLUNTEER is the focus of Episode 19 of the Ask the Expert podcast.

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Aug 27, 2018

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 the challenges of applying and interviewing for those jobs? That’s what we are going to discuss on our Career Counselor episode of Ask the Expert podcast, with special guest Don Molter!


Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Jul 23, 2018

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 Bombardier and guest co-host Patrick James Lynch for an open and honest discussion about depression, mental illness, and suicide prevention in the bleeding disorders community, and the work that she’s doing to make an impact.

NotOk app: https://www.notokapp.com/

Research Articles:

Journal of Blood Medicine: Sue duTreil: Physical and psychosocial challenges in adult hemophilia patients with inhibitors https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4114907/

Haemophilia: Iannone M, Pennick L, Tom A, Cui H, Gilbert M, Weihs K, Stopeck AT: Prevalence of depression in adults with haemophilia. https://www.ncbi.nlm.nih.gov/pubmed/22642565

HERO Study: http://www.herostudy.org/

Suicide Prevention Hotline:  1-800-273-TALK (8255) https://suicidepreventionlifeline.org/

 

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Jun 25, 2018

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 exploring some of the myths around nutrition, tips for how to make healthy eating easier, and what effect food has on bleeding disorders. Our guest on Episode 16 of ‘Ask the Expert’ is Tracy Mann, a registered dietician and founder of Everyday Nutrition, LLC, who shares with us some easy and helpful ways to eat and feel better!

 

Everyday Nutrition, LLC.

https://www.everydaynutritionllc.com/

 

Choose my Plate: Guide to helping you eat a more balanced diet.

https://www.choosemyplate.gov/MyPlate

 

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

May 27, 2018

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 Foundation of Michigan. Shari not only has personal experience adopting a child with hemophilia from a developing country but also works with individuals around the country to help them navigate the challenge adoption system. We explore her personal journey through adoption and learn about what the overall adoption process looks like. We also touch on the unique challenges this presents when the adopted child has a chronic medical condition.

To contact Shari, please visit the website below.

https://www.hfmich.org/what-we-do-adoption/

 

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook PageFacebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia. 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Apr 22, 2018

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 throughout their lifetime. Today for ‘Ask the Expert’, we will be focusing on the role of physical therapists in the care of individuals with bleeding disorders, how that has evolved in the decades since prophylactic treatment has become more common and what some of the new research shows in the bleeding disorders community. Episode 14, our physical therapy episode of the podcast features special guest Sharon Funk. Sharon Funk has been working as a physical therapist with the University of Colorado Hemophilia and Thrombosis Center for 41 years and has been a pioneer in the field of physical therapy and bleeding disorders.

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

All 2018 episodes of Ask The Expert are made possible exclusively by Bayer & Living With Hemophilia

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Mar 26, 2018

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 therapy world. Our expert for this month’s episode is Dr. Marilyn Manco-Johnson, Director of the University of Colorado Hemophilia and Thrombosis Center, who helps us get a better understanding of what gene therapy is and where the current technology stands. Welcome to Episode 13 - or our Gene Therapy Episode - of the Ask The Expert Podcast!

 

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

 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Feb 25, 2018

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, Executive Director of the New England Hemophilia Association (NEHA) and long-time community advocate, who speaks about the many different ways we can be advocates. Welcome to Episode 12 - or our Community Advocates Episode - of the Ask The Expert Podcast!  

Follow the link below and click the ‘Receive our Newsletter’ link to receive updates regarding healthcare updates referenced by Rich Pezzillo

http://www.hemophiliafed.org/advocacy/

Registration for the National Hemophilia Foundation's Washington Days:

https://www.hemophilia.org/Events-Educational-Programs/Washington-Days

 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Jan 21, 2018

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. But what exactly is this form of non-factor replacement therapy? How does it work? And what should patients and families impacted by hemophilia and inhibitors be thinking and asking their clinicians about? That’s what we’re here to discuss with this month’s guest, Dr. Guy Young. Welcome to Episode 11 - or our Inhibitors and New Therapies Episode - of the Ask The Expert Podcast!

 

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

 

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

 

Link to Guy Young Interview Transcript

 

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Dec 25, 2017

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 considerations for our community both domestically and global? That’s what we’re here to discuss with this month’s guest, Laurie Kelley. Welcome to Episode 10 - or, our Bleeding Disorders Across The Globe Episode - of the Ask The Expert Podcast!

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

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

LA Kelley Communications

Save One Life

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Nov 27, 2017

“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 this month’s guest, GutMonkey Founder and CEO, Pat Torrey, on Episode 9 - or, our Outdoor Education Episode - of The Ask The Expert Podcast!

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

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

Check out more of our podcasts on BloodStream Media

Check out the GutMonkey website HERE

Oct 23, 2017

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 approach the wonderful chaos that is the holiday season! Welcome to Episode 8 of the Ask The Expert podcast!

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

 

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

 

Sep 25, 2017

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 BloodStream Media’s Ask The Expert podcast series!

 

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

 

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

Randy Curtis’ biography on the Hemophilia Council of California’s website.

PROBE-ing Patients with Hemophilia from NHF’s Hemaware.

Haemophilia Utilization Group Study: assessment of functional health status in hemophilia.

Aug 27, 2017

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 should kids be in advocating for themselves with teachers, administrators, and classmates? We address these questions and many more on Episode 6 of BloodStream Media’s Ask The Expert podcast series!

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

Hemophilia Federation of America’s (HFA’s) Back-To-School Toolkit

Learn more about 504 plans from HFA.

Special thanks to the Texas Bleeding Disorders Conference for allowing us to record Ask The Expert questions with community members during their August 2017 meeting.

Transitioning to a new school LINK

Tips and Recommendations for kids with bleeding disorders to share with their schools LINK

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

Connect with BloodStream:

BloodStream Facebook Page

BloodStream Twitter Account

Email mailbag@bloodstreammedia.com

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream Host Patrick James Lynch on Twitter and Instagram.

Jul 24, 2017

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 Berlin, Germany. Dr. Pipe shares the latest updates on non-factor replacement therapies, gene therapy, and more on Episode 5 of BloodStream Media’s Ask The Expert podcast series!

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

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question), post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia or tweet it to us @BloodStreamInfo or @pjlynch (host)

 

ISTH Congress 2017 Headlines:

BioMarin and Spark: http://www.biopharmadive.com/news/hemophilia-ISTH-spark-alnylam-gene-therapy-biomarin/446849/

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

Emicizumab: https://www.dddmag.com/article/2017/07/positive-results-emicizumab-phase-iii-studies-hemophilia-inhibitors

Nuwiq: http://www.businesswire.com/news/home/20170709005080/en/ISTH-2017-Berlin-Octapharma-presents-exciting-Nuwiq%C2%AE

Q&A with R&D chief of Bioverativ: https://www.dddmag.com/article/2017/07/bioverativ-r-d-chief-breaks-down-data-blood-disorder-drug-pipeline

Steven Pipe presents small molecule therapies: http://isthcongressdaily.org/novel-therapies-hemophilia-small-molecules-treatment-hemophilia/

 

Jun 27, 2017

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 the BCRA mean for our community and Americans at large, and what should we be doing about it? Find out on Episode 4 of BloodStream Media’s Ask The Expert podcast series!

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

Links of Interest:

  • HFA 2017 Health Care Legislation Outlook  LINK 

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can:

May 21, 2017

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 disorders, and addresses topics such as common challenges, research gaps, and encouraging trends in Episode 3 of BloodStream Media’s Ask The Expert podcast series!

 

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

 

Links of Interest

  • Premier Hematology and Oncology Link
  • NHF Victory For Women Link
  • Better You Know Link
  • Let’s Talk Period Link
  • PubMed Link
  • Foundation for Women and Girls Learning Action Network Link
  • NIH Funding Link

 

Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can:

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