Podcasts about hemophilia federation

Stop the Bleeding! is celebrating 14 seasons of using comedy and entertainment to raise awareness and educate about hemophilia and other bleeding disorders. Join creator, director, and star, Patrick James Lynch, in a retrospective with director and writer Jim Fagan as they reminisce about the show's characters and conflicts, and how entertainment & digital media was used to engage, educate, and inspire people with chronic conditions.   Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Watch the trailer for the latest season! AWARDS & HONORS   2018 LA Web Fest - Best Premise for a Comedy Series (Winner); Best Cinematography, Best Editing (Nomination) 2017 Imagen Awards - Best Web Series (Nomination) 2017 Brooklyn Web Fest - Best Ensemble (Nomination) 2014 National Hemophilia Foundation - Meritorious Service Award (Winner) 2013 Hemophilia Federation of America - Health & Wellness Award (Winner)   It's a Whole New World Gene Therapy Segment brought to you by CSL Behring, which now has a first-of-its-kind hemophilia B treatment. Visit BeyondHemB.com or download B SUPPORT wherever you get your apps for more information.   Segment is brought to you by Genentech: Visit www.hemashort.com to watch the short film. Show Notes: Subscribe: The BloodStream Podcast   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter  BloodStream on Instagram BloodStream on LinkedIn BloodStream on TikTok  

This episode of the Global Hemophilia Report podcast explores the significance of grassroots advocacy within hemophilia associations and chapters, emphasizing the critical role of data in advancing advocacy efforts. Experts from various U.S. organizations discuss the historical impact of the 1980s blood contamination crisis and the evolution of advocacy through its challenges and triumphs. The conversation highlights the importance of data collection, transparency, and community engagement in sustaining and enhancing treatment and support for those affected by hemophilia. The episode also addresses future advocacy strategies and the importance of continuous collaboration at the national and local levels. Contributors: Rigo Garcia, Hemophilia Federation of Southern California Sue Lerch, Great Lakes VE HTC Sue Martin, Bleeding Disorders Association of South Carolina Linda Mugford, Hemophilia Association of New York, Inc. Ray Stanhope, Lone Star Bleeding Disorders Foundation Senior Advisor: Donna DiMichele, MD   Hosted & Written by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes: Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter   

This week, our guest Christie VanHorne shares her career trajectory into public health from a background in history and involvement in humanitarian efforts.  From working as a health educator to creating her own public health consulting business and teaching at Vassar College, Christie's story highlights how hard work, staying true to yourself, and having a solid network are all crucial to building your dream career. Her  journey emphasizes the dynamic nature of professional and personal evolution, encouraging listeners to embrace change and growth. You'll LearnChristie's path into public health through a passion for human rights and social justiceHer work in South Africa with the Peace Corps and international health Building a strong network to open up doors to new opportunitiesDealing with toxic workplaces and how Christie founded her consulting businessHow education has been a common factor throughout all of Christie's career and how her love for teaching led to a decision to pursue a DrPHDeciding between a DrPH and PhD and figuring out which path is best for youFinding your niche in public health, staying true to yourself, and traversing your journey at your own paceToday's GuestChristie is a seasoned public health consultant with 20 years of experience. In 2015, she founded CVH Consulting, LLC., offering services to create impactful health education and training experiences for her clients. Christie has worked with the Institute for Healthcare Improvement (IHI), the New York State Department of Health, the Hemophilia Federation of America, and many more organizations to design, develop, and update programs. She is also a subject matter expert on the social determinants and health equity for many continuing education projects for community-based organization staff and healthcare professionals. From her time in the Peace Corps in South Africa to teaching at Vassar College and all the career experiences in between, Christie's dedication to public health shines. Last year, she was recognized with the prestigious ATHENA Award, an international honor for women who demonstrate excellence in their profession, community service, and mentorship of future leaders. One of her current volunteer roles is serving as the Vice-Chair of the National Women's Health Network Board of Directors. In August, Christie will start her Doctor of Public Health degree at Tulane University, specializing in Equity, Leadership, and Advocacy. She resides in the Hudson Valley, NY, with her beloved pups and husband.ResourcesFollow Christie on LinkedIn and Instagram Learn more about CVH ConsultingSupport the Show.Join The Public Health Career Club: the #1 hangout spot and community dedicated to building and growing your dream public health career.

RARE MAMAS RISING- EPISODE 33  A Rare Adoption Story with Rare Mama Monica Poynter In honor of November National Adoption Awareness Month, guest Monica Poynter shares her incredible rare adoption story. Monica is a proud mother to her sons Tag and Trey and daughter Ophelia. Tag and Trey live with a rare bleeding disorder called hemophilia A, in which the blood does not clot properly. With no family history of the condition, their biological son Tag's diagnosis in 2014 came as a complete shock. Fast-forward to 2020, Monica and her husband Josh grew their family by adopting Trey from an orphanage in China after being inspired by a magazine story about another family who had done the same. The brothers became instantly inseparable, bonded by adoption and their shared condition. Now, the family has another exciting addition with the birth of their daughter, Ophelia. In this episode, Monica shares her family's story of adoption, her journey caring for children living with the same rare condition, and words of inspiration for fellow rare mamas! EPISODE HIGHLIGHTS Tag's Hemophilia A diagnosis  How Monica and Josh rose to the challenge of rare parenting  The road to Trey's adoption  Caring for two children with rare diseases  Tag and Trey's bond  Advice for families interested in adoption   The addition of daughter Ophelia and life today  Monica's best learnings for other rare mamas    LINKS    Kentucky Hemophilia Foundation  https://www.kyhemo.org/index.php    Hemophilia Federation of America https://www.hemophiliafed.org/   Hemlibra® https://www.hemlibra.com/   CONNECT WITH NIKKI   Website https://raremamas.com/ Instagram https://www.instagram.com/Rare_Mamas/ Email info@raremamas.com  

Tackle policy in all 50 states or head to Washington, D.C. to walk the halls of Congress? In this episode, Lindsay Cox, former senior manager of Advocacy and Outreach at the Hemophilia Federation of America, speaks with Jennifer Muthig, the Senior Director for Advocacy & Policy at the National Multiple Sclerosis Society. Learn all about the difference between advocacy and policy-making on the state v. federal level and the accessibility of virtual advocacy as a result of the pandemic. For more information contact HFA at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America's website at hemophiliafed.org.

Wondering if your voice has impact? In this episode, Adrian Palau-Tejada, Senior Manager for Health Disparities & Engagement at the Hemophilia Federation of America, speaks with Tyshawn Constantine, the Associate Director at the Hemophilia Association of New York. Join us as we discuss Tyshawn's evolution through advocacy work, drawing inspiration from the diversity of the New York and bleeding disorders communities and empowering others to advocate for themselves. For more information, contact Lindsay Cox, Senior Manager for Advocacy & Outreach, at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America's website at hemophiliafed.org.

All with a little help from our friends! In this episode, Miriam Goldstein, HFA's Interim Vice President for Public Affairs, speaks with Will Hubbert, the National Psoriasis Foundation's Grassroots and Advocacy Manager, about the importance of coalitions, alliance building, and developing confidence and enthusiasm amongst grassroots advocates. For more information contact Lindsay Cox, Senior Manager for Advocacy & Outreach at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America's website at hemophiliafed.org.

In this mini episode, Patrick and Amy run through Believe & BloodStream presence at the Hemophilia Federation of America's Symposium before speaking about some major April anniversaries and introducing the new season of BloodStream Media's Pain Podcast! Show Notes: Presenting Sponsor: Takeda. Visit bleedingdisorders.com to learn more. Subscribe to BloodStream Podcast HFA Symposium 2022 Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on Twitter 

Remember The Girls collaboration with Hemophilia Federation of America. 

Rural healthcare faces many challenges, which become even more complicated when rare disorders are involved. March is Bleeding Disorders Awareness Month, and Shellye Horowitz, Associate Director of Education for the Hemophilia Federation of America, has experienced first-hand the obstacles that a patient with a rare bleeding disorder faces while living in a rural area. “We need to make sure that the knowledge and information base is wide enough in our rural communities that we can protect patients with rare bleeding disorders…” ~Shellye Horowitz Shellye Horowitz is the Associate Director of Education at the Hemophilia Federation of America. Shellye has strong ties to the bleeding disorders community with six traceable generations of hemophilia A in her family, affecting both men and women. Shellye has given presentations and served on numerous committees focused on increasing awareness of diagnosis and treatment for women's disorders. Additionally, Shellye wrote a column for Hemophilia News Today that addressed issues regarding women and bleeding disorders called "The Forgotten Factor". Shellye's hobbies include International Folk Dance, ham radio, geocaching, knitting, hiking, home improvement projects, and walking her dog Hope on the beach. To learn more, check out www.hemophelia.org

Heard about copay accumulator adjuster programs (CAAPs), but are unsure what they are? Look no further! In this episode, Lindsay Cox, HFA's Senior Manager for Advocacy & Outreach, speaks with Bob Graham, the New York State Bleeding Disorders Coalition's Public Policy Director, and Mark Hobraczk, HFA's Senior Manager for Policy & Advocacy, about what copay accumulator adjuster programs are, what HFA and the NYSBDC are doing to combat this issue, and how listeners can take action to ensure that all copays count. For more information contact Lindsay Cox, Senior Manager for Advocacy & Outreach at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America's website at hemophiliafed.org.

Did you know that other chronic disorders face the issue of step therapy as well? In this episode, Lindsay Cox, HFA's Senior Manager for Advocacy & Outreach, speaks with Hannah Lynch, Associate Director of Federal Government Relations and Health Policy for the National Psoriasis Foundation, about how step therapy impacts our communities, what HFA and NPF are doing to combat step therapy, and how listeners can take action on this issue. For more information contact Lindsay Cox, Senior Manager for Advocacy & Outreach at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

Tis the season for open enrollment! In this episode, Miriam Goldstein, HFA's Director of Policy & Principal Legal Counsel, and Mark Hobraczk, HFA's Senior Manager, Policy & Advocacy, speak with Eric Iglewski, Social Worker and Vice President of Clinical Services at the Mary M. Gooley Hemophilia Center in Rochester, NY, about what you need to know when considering health care coverage options for 2022. For more information contact Lindsay Cox, Senior Manager for Advocacy & Outreach at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

So you're headed to college and you have a bleeding disorder. Need some advice? In this episode, former HFA Policy and Government Education Summer Intern, Will Hubert, chats with Matt Delaney and Chantel Winslow about their experiences navigating college with a bleeding disorder.  For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

Christine VanHorne is a public health consultant, speaker, trainer, facilitator, patient advocate and a fearless advocate for race equity and health disparities. I met Christie in Heather Sager's Speak Up to Level Up Class. Her journey from undergrad student  majoring in Genocide studies, to the Peace Corps, to Public Health,  will motivate you. We have a great conversation about how white people must speak up against racism, working in communities, speaking to your doctor and so much more. It is the stories people have to share that motivate Christie. Enjoy! Learn about Christie:Christine is the President of CVH Consulting and founder of How to Talk to Your Doctor, a project that aims to address health literacy with patients and health professionals. As a consultant, Christie develops health curriculum, leads train-the-trainers for nonprofit and healthcare professionals, and facilitates community coalitions and working groups to improve health outcomes. With 20 years of experience in the health sector, two masters (Education / Public Health), service in the Peace Corps, and appearances on numerous health-focused podcasts, Christie is passionate about bringing her expertise where it is most needed. Christie has consulted for organizations such as the Hemophilia Federation of America, Institute for Healthcare Improvement, National Environmental Health Association, Malcolm X College, Multiple Sclerosis Association of America, and Planned Parenthood. She lives in the beautiful Hudson Valley, NY with her husband and two dogs. Get in touch with Christie:Instagram: @Howtotalktyourdoctor@christie_publichealth LinkedInFlow Podcast Be sure and join her History of Health Disparities and Current Impacts class next time it opens.  Here is the resource Christie talked about: https://www.kff.org/coronavirus-covid-19/issue-brief/implications-of-covid-19-for-social-determinants-of-health/Get in touch with Ann:communityevaluationsolutions.comCoalition or nonprofit leader stuck on how to get started making a difference in your community?  Download my free guide! Like what you heard? Please like and share wherever you get your podcasts! Connect with Ann: Community Evaluation Solutions How Ann can help: · Support the evaluation capacity of your coalition or community-based organization. · Help you create a strategic plan that doesn't stress you and your group out, doesn't take all year to design, and is actionable. · Engage your group in equitable discussions about difficult conversations. · Facilitate a workshop to plan for action and get your group moving. · Create a workshop that energizes and excites your group for action. · Speak at your conference or event. Have a question or want to know more? Book a call with Ann .Be sure and check out our updated resource page! Let us know what was helpful. Community Possibilities is Produced by Zach Price Music by Zach Price: Zachpricet@gmail.com

What is life like when you have a bleeding disorder and are seeking employment opportunities? In this episode, former HFA Policy and Government Education Summer Intern, Will Hubert, chats with Hector Moreno about his path to becoming an educator and living with a hemophilia. For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

Patients and doctors must collaborate for a successful office visit and ongoing relationship.  Public health expert, Christie VanHorne, shares important tips for both patients and doctors on how to successfully navigate the conversation that neither were trained on how to do.In this episode, Christie covers:The history behind why women tend to be dismissedHow to find a doctor to meet your needsHow to prepare for your doctor appointmentsHow to have the right conversation to optimize your appointmentsLessons for both patients and doctorsWhat you can do if you have a bad appointmentNOTE:  I made a reference to 2 types of HPV.  To clarify, there are multiple HPV types but 2 that indicate a high risk of cervical cancer.Referenced in the podcast & related episodes:Courses for patients, parents, and professionalsFind a DoctorPrepare for Doctor AppointmentDr Alyson McGregor | Sex Matters in Healthcare: What Women Need to Know and Do About ItAimee Raupp | It’s NOT Your Genetics, It’s Your Lifestyle: Unpacking the Science of EpigeneticsDr Jill Krapf | Pain with Sex? What You Can Do About ItHow Healing Works by Wayne JonasPeriod Repair Manual by Lara BridenBody Belief by Aimee RauppAnd be sure to:Follow Fempower Health on Instagram for updates and tips.Subscribe to the podcast and tell your friends!Shop the Fempower Health store, which has many products discussed on the podcast.Sponsors:ReceptivaDx the sponsor of all of Season 2.  Provide code FEMPOWER-HEALTH for $75 off.More About Christie VanHorneChristie is the President of CVH Consulting and founder of How to Talk to Your Doctor, a project that aims to address health literacy with patients and health professionals. As a consultant, Christie develops health curriculum, leads train-the-trainers for nonprofit and healthcare professionals, and facilitates community coalitions and working groups to improve health outcomes. With 20 years of experience in the health sector, two masters (Education / Public Health), service in the Peace Corps, and appearances on numerous health-focused podcasts, Christie is passionate about bringing her expertise where it is most needed. Christie has consulted for organizations such as the Hemophilia Federation of America, Temple University, National Environmental Health Association, Malcolm X College, Multiple Sclerosis Association, United Way, and Planned Parenthood. She lives in the beautiful Hudson Valley, NY with her husband and two dogs. **The information shared by Fempower Health is not medical advice but for information purposes to enable you to have more effective conversations with your doctor.  Always talk to your doctor before making health-related decisions. Contains affiliate linksSupport the show (https://www.patreon.com/fempowerhealth)

New administration, new Congress. In this episode, former HFA Policy and Government Education Summer Intern, Will Hubert, chats with HFA Policy Director, Miriam Goldstein, about the 2020 US Election and what health care policies and actions to expect from the Biden Administration and their impact on the bleeding disorders community. For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org. *This episode was recorded prior to the January 20th Inauguration.

Curious about what it is like to be a Congressional staffer? Searching for guidance on how to prepare for your upcoming virtual visit? Join us Monday, November 9th at 5PM EST for another live listening session. Our very own Will Hubert chats with Audrey Smith, an aide for Senator Joe Manchin (D-WV), to give you an insider look at the ins and outs of the Capitol from a staffer's point of view. For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

At HFA, we believe that advocacy is all around us from your school all the way to Congress. In this episode, former HFA Policy and Government Education Summer Intern, Will Hubert, chats with HFA Policy Director, Miriam Goldstein, about advocating for and against policies that impact the bleeding disorders community within local, state, and national governments. Now more than ever is it imperative for your voices to be heard to ensure that everyone has continued access to quality comprehensive health care, including future therapies. For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

When you live with a bleeding disorder, having health insurance is a must. With so many options, finding a plan that works best for you can be a daunting task that consumes a lot of your time and energy. In this episode, HFA Policy and Government Education Summer Intern, Will Hubert speaks with Erin Hemlin, Director of Health Policy and Advocacy at Young Invincibles, a national nonprofit that advocates on behalf of young adults, about navigating the insurance market with a chronic illness, what pitfalls to avoid when selecting a health plan, and how to let your voice be heard as young health care advocate.  For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org. Feel free to also check out the Hemophilia Federation of America website at hemophiliafed.org and young Invincibles at younginvincibles.org. 

Everyone has a story to tell. And sharing whatever creative content you have can make a huge difference, especially when your audience are people living with chronic illness. Storytelling can help people with chronic illness and rare diseases to move from a sad narrative to a more hopeful one where they can see themselves as people who have manageable chronic disease. In this episode, I’m joined by Patrick James Lynch, CEO of Believe LTD and host of Bloodstream Media. He shared with us how he and his team create engaging stories that positively impact people with chronic and rare disease, as well as his personal experience with loss and triumph, and his personal journey of living with severe hemophilia. Join me as we dive into how Patrick turned Believe LTD into a sustainable business and why they create content to make a difference in the world! Episode Highlights: Hobbies and activities that Patrick enjoys outside of his work at Believe LTD Patrick talks about his work at Believe LTD and their mission  Content is King: What it means and why? How Believe LTD is serving the community of hemophilia and other chronic rare diseases How Patrick turned Believe LTD into an actual and sustainable business Always keep the end-users in mind when doing business The most important thing to consider when creating authentic content About Our Guest: Patrick James Lynch is a filmmaker, media professional, and globally-recognized health advocate who has delivered more than 100 presentations, all around the world.  He's been recognized with the Hemophilia Federation of America's (HFA) Health & Wellness Award (2013), the National Hemophilia Foundation's (NHF) Meritorious Service Award (2014), was a featured speaker during World Federation of Hemophilia's (WFH) World Congress (2016, 2018), is an executive producer of Save One Life's 2020 content campaigns, has served as founding board president of the 501(c)(3) Entertainment 2 Affect Change since 2013, and since 2011 has been the CEO of Believe Limited. His work has been featured by Backstage, BuzzFeed, Forbes, Fox News, HemAware, Hemophilia News Today, HuffPo, PBS, Reuters, VoyageLA, and elsewhere. Film credits include documentaries sometimes, i think about dying (https://youtu.be/JTLBnjWbpBo) (EP, Sundance 2019, Oscars 2020 shortlist), and Ryan's Mom (producer/writer, in development w/ Jersey Films). Notable digital content includes the comedy web series "Hemophilia: The Musical (https://www.breakingthroughhemophilia.com/), an original 6-song musical, co-created with teen participants (original cast recording streamable on website!) Bleeding disorders programs of note include the arts workshop The Science Fair (http://thesciencefair.org/). Patrick can be seen as an actor in the Amazon Prime series patrickjameslynch.com (http://patrickjameslynch.com/). Links Supporting This Episode: Patrick James Lynch’s website: (https://www.believeltd.com/)  Patrick James Lynch’s Instagram: (https://www.instagram.com/patrickjameslynch/) Patrick James Lynch’s Twitter: (https://twitter.com/pjlync) Patrick James Lynch’s LinkedIn: (https://www.linkedin.com/in/believepatrick) Bombardierblood Trailer: (https://vimeo.com/293432617) Bombardier Blood website: (https://www.bombardierblood.com/) Bloodstream Podcast: (https://podcasts.apple.com/us/podcast/bloodstream/id1133574474) Support this podcast

What thoughts come to mind when you think about mental health? How about mental health and bleeding disorders? Did your answer change?  What, if any, effect has your bleeding disorder had on your mental health?  HFA Policy and Government Education Summer Intern, Tameelah Dawson chats with fellow bleeding disorders advocates, Ashley Johnson and Bradley Odac about their experiences growing up with a bleeding disorder and the impact it had on their mental health. They address a variety of topics from surviving automobile accidents and building up the courage to get back on the road again to challenging stereotypes about bleeding disorders, being from another country, and family planning.  For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

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 she became involved in non-profit work, her passion and philosophy on fundraising, and how she became involved within the bleeding disorder community! Join us to hear more about Sharon’s personal journey and what makes her tick! A fun episode of Ask the Expert! Welcome to Episode 38 - or our Get to Know the Expert Episode - of the Ask The Expert Podcast!    Check out the terrific resources from the Hemophilia Federation of America in the midst of COVID-19 outbreak: Hemophilia Federation of America: https://www.hemophiliafed.org/ HFA COVID-19 Resources Page: https://www.hemophiliafed.org/news-stories/2020/04/coronavirus-covid-19-what-hfa-is-doing/ HFA COVID-19 Relief Fund: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/covid-19-relief-fund/ HFA Helping Hands Financial Assistance Program: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/helping-hands-emergency-assistance/ NHF Informational Webinars during COVID Crisis: https://www.hemophilia.org/ 

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 pandemic. She shares how HFA has set up a COVID-19 Relief Fund, as well as utilizing their foundational Helping Hands financial assistance program to provide support to community members during the crisis. Sharon stops by to share her vision for HFA going forward and how increased communication with NHF sets both organizations up for success. Join us for another great episode of Ask the Expert! Welcome to Episode 38 - or our Meet Sharon Meyers Episode - of the Ask The Expert Podcast!  Check out the terrific resources from the Hemophilia Federation of America in the midst of COVID-19 outbreak: Hemophilia Federation of America: https://www.hemophiliafed.org/ HFA COVID-19 Resources Page: https://www.hemophiliafed.org/news-stories/2020/04/coronavirus-covid-19-what-hfa-is-doing/ HFA COVID-19 Relief Fund: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/covid-19-relief-fund/ HFA Helping Hands Financial Assistance Program: https://www.hemophiliafed.org/our-role-and-programs/assisting-and-advocating/financial-assistance/helping-hands-emergency-assistance/ NHF Informational Webinars during COVID Crisis: https://www.hemophilia.org/ 

Patrick and Kristin talk about his journey with hemophilia and the impact on his mental health. Patrick shares where he finally opened up to his friends and colleagues a time when he was struggling with mental health challenges. The opening up, as it always does, was liberating and humbling for him. Patrick James Lynch is a filmmaker, media professional, and globally-recognized health advocate who has delivered more than 100 presentations, all around the world. He's been recognized with the Hemophilia Federation of America's (HFA) Health & Wellness Award (2013), the National Hemophilia Foundation's (NHF) Meritorious Service Award (2014), was a featured speaker during World Federation of Hemophilia's (WFH) World Congress (2016, 2018), is an executive producer of Save One Life's 2020 content campaigns, has served as founding board president of the 501(c)(3) Entertainment 2 Affect Change since 2013, and since 2011 has been the CEO of Believe Limited. His work has been featured by Backstage, BuzzFeed, Forbes, Fox News, HemAware, Hemophilia News Today, HuffPo, PBS, Reuters, VoyageLA, and elsewhere.Film credits include documentaries Bombardier Blood (director/producer; EP Alex Borstein), My Beautiful Sutter (EP; also EP: Paul Rudd), Poster Child (director/producer, in production), and the scripted films Elsewhere (director/actor; Best Picture HRIFF; Best Ensemble NYCIFF) sometimes, i think about dying (EP, Sundance 2019, Oscars 2020 shortlist), and Ryan's Mom (producer/writer, in development w/ Jersey Films).Notable digital content includes the comedy web series "Stop The Bleeding!" (9 seasons; numerous awards; bi-lingual), The BloodStream Podcast (creator/host, also founder: BloodStream Media), and Hemophilia: The Musical, an original 6-song musical, co-created with teen participants (original cast recording streamable on website!)Bleeding disorders programs of note include the arts workshop Breaking Through!, the youth empowerment program Teen Impact Awards, and the interactive & educational The Science Fair.Patrick can be seen as an actor in the Amazon Prime series Baker's Dozen and he occasionally writes about mental health and other things at www.patrickjameslynch.com and www.believeltd.com

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 to join us as they reminisce about the history of camp, the amazing leadership that is developed at camp and share the evolution of Camp Bold Eagle. Whether you are a parent struggling with sending your child to camp for the first time or a seasoned camper that can’t wait to see your friends next summer, join us for a conversation about the history of bleeding disorder camps and unique power camp has to foster independence in all of us.   Welcome to Episode 30 - or our Summer Camp Special! Episode - of the Ask The Expert Podcast!     Find a bleeding disorder camp in your area: Hemophilia Federation of America Camp Directory National Hemophilia Foundation Camp Directory   “The concept back then was to see what they could do rather than couldn’t do.“ -Sue Lerch “Many chronic disease camps are designed to forget about disease, but hemophilia camp was designed to engage with the disorder to develop independence.” -Sue Lerch “Camp is not about the place - it’s about the people.” - Tim Wicks      

  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, and treatment adherence. Cindy is the director of physical therapy at the Los Angeles Orthopaedic Institute for Children and walks us through what defines joint health, how one bleed can create irreversible damage and the value of adhering to treatment regimens to stay active. Join us for a great Ask the Expert!   Welcome to Episode 29 - or our Does Treatment Adherence Mean Healthy Joints? Episode - of the Ask The Expert Podcast!     For more information about joint health and physical activity, check out these resources: Steps for Living: https://stepsforliving.hemophilia.org/step-up/treatment/treat-responsibly-today-for-a-healthy-tomorrow Hemophilia Federation of America: https://www.hemophiliafed.org/understanding-bleeding-disorders/complications/joint-damage/ World Federation of Hemophilia: http://elearning.wfh.org/elearning-centres/prophylaxis/ Bayer Announces  A Voluntary Recall of Two Lots of Kogenate FS: https://www.hemophilia.org/Newsroom/Medical-Advisories/Medical-Advisory-425-Bayer-Announces-a-Voluntary-Recall-of-Two-Lots-of-Kogenate-FS   “If you have better musculature around the joints, you will have fewer bleeds. ” -Cindy Bailey, Ph.D “Up to the ages of 8-11, you can repair cartilage damage by a bleed.”  - Cindy Bailey, Ph.D “Adherence is incredibly important because any amount of blood in the joint can cause deterioration” -Cindy Bailey, Ph.D     BloodFeed: https://www.bloodfeed.com   Connect with BloodStream Media: Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream on Facebook BloodStream on Twitter   Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

In Part 3 of BloodLine’s Hemophilia and Young Adulthood Series - our final episode - eight members of the Hemophilia Association of New Jersey (HANJ) give their perspectives on DATING & INTIMACY, how hemophilia plays a role in a young adult’s FAMILY, and what they HOPE for the future of the hemophilia community. This conversation was recorded live on January 17th at the Madison Hotel in Morristown, New Jersey and was co-hosted by BloodStream Media’s Natalie and Patrick James Lynch. Series Sponsor: Shire. Visit bleedingdisorders.com to find useful tools and resources for managing life with a bleeding disorder. Patient Organization Partner: The Hemophilia Association of New Jersey (HANJ). Learn more about HANJ and their mission by visiting http://hanj.org. National Hemophilia Foundation’s Chapter Directory. Hemophilia Federation of America’s Member Organizations Search Platform.   BloodLine is a BloodStream Media podcast series featuring deep dives into the stories and topics that matter most to the bleeding disorders community. Subscribe to The BloodLine Podcast on iTunes (http://bit.ly/BloodLinePod) or visit BloodLinePod.com to stream or subscribe via links.  Find all of BloodStream Media’s podcasts for the bleeding disorders community by visiting BloodStreamMedia.com.  

This month on The BloodStream Podcast, we discuss how one executive director in China has creatively given hope, dignity and income to her patients, we take you through how to stay fit and healthy while travelling, and we introduce a brand new game here on the BSpod. Plus, Hannah Lutz shares her story of life with Type 3 Von Willebrand Disease and Michael Hargett- the hemophiliac who lost 280 pounds and became the first person with hemophilia to undergo a heart transplant- joins us as today’s interview guest to discuss his remarkable journey. All that and more on Episode 21 of The BloodStream Podcast!   Exclusive Sponsor: Shire Remembering Barry Haarde: Powering Through HFA 2016 Like Segment: How to Fit in Exercise While You Travel   Share Segment: Hannah Lutz - Type Three Girl    Comment Segment: How Paper and Scissors Gave Back Dignity to Hemophilia Patients   Interview Segment: Michael Hargett’s NewHeart4Mike.com website   Community News in 60 Seconds: Registration for NHF’s Washington Days Registration for NHF’s Bleeding Disorders Conference Patient Access Network Foundation Opens Hemophilia Patient Assistance Fund Hemophilia Puts Damper on Patient’s Sex Life and Health Status, Study Reports My Life, Our Future to be Featured in CDC Public Health Webinar NORD Launches 7,000 Mile Rare Movement Rebinyn Now Available for the Treatment of Hemophilia B Sanofi, Facing Threat From Generics, Moves to Buy Hemophilia Drug Makers (Bioverativ) Europe’s CHMP Recommends Approval of Hemlibra to Treat Hemophilia A (with Inhibitors) Shire Granted European Union Marketing Authorization for Adynovi   Parting Shots: #EAHAD2018 on Twitter   Other Links of Interest Project CALLS from Hemophilia Federation of America HTCtour.org- Stop The Bleeding’s Guided Tour of a Hemophilia Treatment Center BloodStreamMedia.com Powering Through Podcast Ask The Expert Podcast   BloodFeed: https://www.bloodfeed.com Connect with BloodStream: Email mailbag@bloodstreammedia.com Find all of our bleeding disorders podcasts on BloodStreamMedia.com BloodStream Facebook Page BloodStream Twitter Account Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay Spotify: http://spoti.fi/2nNPhui

Andy Slavitt, the former head of Medicare, Medicaid, and the Affordable Care Act (ACA) under President Obama, joins us for a very special interview segment on the importance of the ACA for people with hemophilia. UK-based community advocate Laurence Woollard provides insight into the UK bleeding disorders community and his personal journey in hemophilia advocacy. Natalie leads a New York Times story on the debate surrounding how to price gene therapy treatments, and Patrick provides an overview of the recent, terrible news of a patient death during the Fitusrian clinical trial - what happened, what it means, and what happens next? Listen now on Episode 16 of The BloodStream Podcast.   Exclusive Sponsor for Episode 16: Shire   Like Share Comment Segments Like: NYT: New Gene-Therapy Treatments Will Carry Whopping Price Tags   Share: Laurence Woollard’s “The Endeavour to Progress”    Comment: Alnylam Suspends All Trials of Fitusiran After Hemophilia A Patient Dies in Phase 2 Study // Story from RareDr.com // Story from FierceBiotech   Andy Slavitt Interview JAMA Forum: Reforming Medicaid USA Today Column: Spare America a do-over on health care. Seize the bipartisan moment.   Other Links of Interest Clinical Trials 101 from HemAware Clinical Trials from the Hemophilia Federation of America Powering Through Podcast Ask The Expert Podcast Making-Of Bombardier Blood Video Stop The Bleeding! Season 7 - Behind The Story Videos Hope For Hemophilia   BloodFeed: https://www.bloodfeed.com Powering Through Podcast http://poweringthrough.org/podcast Ask The Expert Podcast http://bloodstreamexpert.com    

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.

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: Email it to mailbag@bloodstreammedia.com (Subject: Ask The Expert Question) Post it on the wall of our Facebook Page, Facebook.com/BloodStreamMedia Tweet it to us @BloodStreamInfo or @pjlynch (host)

   The BloodStream Podcast - Episode 11 - Program Notes   Listen to Episode 11 by clicking the play button on the audio player above, or follow any of these links to listen and subscribe on your podcast player of choice (recommended):   iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay   Description: In this episode, Patrick and Natalie celebrate World Hemophilia Day with two special segments: an interview recap with Patrick of Believe Limited's recent trip to Nepal for production on Bombardier Blood and a mashup of soundbites and interview clips from Believe's production on the World Federation of Hemophilia's Treatment for All web series. All that, plus a few special announcements and a brief recap of Hemophilia Federation of America's Annual Symposium on Episode 11 of The BloodStream Podcast!   The BloodStream Podcast is sponsored exclusively by Shire. Learn more about Shire in the bleeding disorders community: Link.   Program Notes: Learn more about World Hemophilia Day from the World Federation of Hemophilia (WFH): Link Check out Stop The Bleeding!’s Season 7 launch w/ their a World Hemophilia Day special episode: Link. Listen to BloodStream Media’s new Von Willebrand Disease podcast series from BloodLine: Link. Check out Hemophilia Federation of America’s website for more on the 2017 and 2018 Symposiums: Link.   Special Segments Learn more about Chris Bombardier’s historic climb of Mount Everest as well as Bombardier Blood, the documentary film being produced about it: Link. Watch all 10 episodes of WFH’s Treatment for All web series and learn more about their Humanitarian Aid Program: Link. Contact BloodStream Media: Got an idea for a future segment, or a question for Ask The Expert? Email us: mailbag@bloodstreammedia.com.   BloodStream Media on Social: BloodStream Facebook Page BloodStream Twitter Account BloodStream Host Patrick James Lynch on Twitter and Instagram.   Subscribe to The BloodStream Podcast: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay  

In Episode 6, Patrick introduces a new BloodStream co-host, touches on some headlines of interest in our Trending Topics segment, dives into what the recent election may mean for the bleeding disorders community in our Like, Share, Comment segment, and discusses disabilities, entertainment, and the importance of partnership with Ali Stroker, the first Broadway performer who uses a wheelchair. All this and more on Episode 6 of BloodStream! Sponsors for Episode 6: Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website. Supporting Sponsor: Entertainment to Affect Change (E2AC!) Link to STB! website. Trending Topics: Save One Life Celebrates Its 15th Anniversary. SaveOneLife.net / Story On Gala. The American Society of Hematology’s (ASH) Annual Meeting takes place December 3rd - 6th in San Diego, California. hematology.org. The Hemophilia Federation of America’s Blood Sisterhood Program Launches The Sisterhood App for Women with Bleeding Disorders. Sisterhood in the iTunes App Store. Paralyzed Monkey Walks Again. NPR Story. Should I Trust Wikipedia With My Health? NPR Article.   Like, Share, Comment Segment:     Blood Clots Dent Hopes for Hemophilia Drug Emicizumab. Link Hemophilia News Today’s Article On Emicizumab Data from World Congress. Link YogaWorks Website. Link HFA Responds to Election: We Are Always Here For You. Link NHF Addresses Your Post-Election Health Questions. Link Special Guest: Ali Stroker Ali Stroker, Official Website. Link Deaf West Theatre. Link BloodStream on Social: BloodStream Facebook Page BloodStream Twitter Account BloodStream Host Patrick James Lynch on Twitter and Instagram. Subscribe to BloodStream: iTunes: http://bit.ly/bloodstreamitunes Stitcher: http://bit.ly/bloodstreamstitcher LibSyn: http://bit.ly/bloodstreamlibsyn SoundCloud: http://bit.ly/bloodstreamSC TuneIn: http://bit.ly/bloodstreamtunein Google Play: http://bit.ly/bloodstreamPlay