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)
Connect with BloodStream:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
“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
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)
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.
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:
Email mailbag@bloodstreammedia.com
Find all of our bleeding disorders podcasts on BloodStreamMedia.com
BloodStream Host Patrick James Lynch on Twitter and Instagram.
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/
Emicizumab: https://www.dddmag.com/article/2017/07/positive-results-emicizumab-phase-iii-studies-hemophilia-inhibitors
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/
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:
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can:
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
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can:
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 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
Have a bleeding disorders-related question you’d like to submit to Ask The Expert? Excellent! You can:
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 series. Subscribe to Ask The Expert and check out BloodStream Media's other podcasts at BloodStreamMedia.com.
Interested in learning more about clinical trials? Check out ClinicalTrials.gov.
Have a question you would like to ask an expert (on bleeding disorders)? You're in luck! Email mailbag@bloodstreampod.com.