Hope Charities

You pay for insurance—so why are patients still being denied medication?In this important episode, Jonathan James sits down with healthcare policy advocate Kim Czubaruk to unpack Alternative Funding Programs (AFPs), how they work, and why more patients are facing treatment delays, denials, and confusion while still paying for coverage.They discuss how some employer-sponsored health plans exclude specialty medications or trigger behind-the-scenes denials while steering patients into outside vendor programs. Kim explains why this can create dangerous gaps in care, emotional distress, and added burdens for families already managing chronic illness.Topics include:• What Alternative Funding Programs are• Why patients can be denied while insured• Treatment delays and access barriers• Impact on bleeding disorders, cancer, and chronic illness• Employer plan risks and responsibilities• What advocates are doing to fight backIf you’ve ever battled insurance for medication access, this episode is for you.🎧 Hit play, share this episode with someone navigating insurance challenges, and don’t forget to follow. Every listen helps us bring patient-first conversations on healthcare access to more people who need them.Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org. Support the show

A child with hemophilia should not have to live in constant pain because of where they were born—but for much of the world, that is still reality.In this episode, we sit down with Cindy Komar of Save One Life on World Hemophilia Day to discuss the global treatment gap and what “access to care” really looks like for families choosing between basic needs and life-saving treatment.We discuss:• The Global Hemophilia Treatment Gap and Why 75% Remain Undiagnosed or Untreated• Differences Between U.S. Prophylaxis and Emergency-Only Care Worldwide• How Save One Life Provides Direct Financial Assistance to Families• Child Sponsorship and What $35/Month Can Do• Donating Unused Medication to Save Lives• Microenterprise Grants Empowering Women and Families• The Reality of Poverty, Stigma, and Limited Access to Care• Ways to Get Involved Through Advocacy, Fundraising, and AwarenessSave One Life works with partners in developing countries to provide financial support, medication access, and long-term solutions that help families move from survival to stability.To learn more or get involved, visit:https://saveonelife.netIf this conversation moved you, share it with someone who wants to make a difference—and subscribe for more conversations on bleeding disorders and global access to care.Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org. Support the show

Alternative funding programs are rapidly spreading across employer health plans—but many patients don’t understand how these programs can affect their access to medication.In this episode, William Sarraille, professor of practice and patient advocate, explains how AFPs work, why they’re expanding, and what they mean for patients who depend on high-cost therapies.Together we explore:• What alternative funding programs are• How some plans remove specialty drugs from coverage• Why patients are redirected to third-party assistance programs• Research showing average therapy delays of up to 68 days• How ERISA and ACA regulations create legal openings for AFPs• Privacy and discrimination risks tied to health data sharing• The ethical impact on limited manufacturer and charity programs• An active legal challenge involving foreign-sourced medicationsWe also discuss how patients and advocates are pushing back—and what individuals can do to protect themselves.If you’re navigating a self-funded health plan or supporting someone who is, this episode provides important context and practical steps for protecting access to care.Subscribe for more conversations about patient advocacy, healthcare policy, and access to treatment.Learn more about William Sarraille:https://www.linkedin.com/in/william-sarraille-634a8827/Related Research:HOPE Charities also conducted a peer-reviewed survey examining patient experiences with alternative funding programs (AFPs), including delays in medication access, financial burden, and treatment disruptions. The study highlights how these programs may impact patients relying on specialty medications.Read the study here:https://pubmed.ncbi.nlm.nih.gov/39471273/Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org. Support the show

For 26 years, Nandini Pethe was misdiagnosed before learning she was living with moderate hemophilia. In this episode, she shares her journey from unexplained bruising in India to discovering factor VIII levels around 3%—and how the right diagnosis, the right team, and the right data changed her life.We discuss:• Early Symptoms and Misdiagnosis as von Willebrand Disease• A Locked Knee at 26 and First Effective Factor Infusions• Severe Joint Damage and Learning Bleed Pain vs. Arthritis Pain• Moving from On-Demand Treatment to Prophylaxis• Raising a Son with Hemophilia• ER Preparation and Advocating with Confidence• Documenting Bleeds with Apps, Photos, and Infusion Logs• Heavy Menstrual Bleeding and Postpartum Hemorrhage as Real Bleeds• Why Women with Hemophilia Are Still Overlooked• The Importance of HTCs, Data Collection, and ResearchHope Charities is committed to advancing education and recognition for women and girls with bleeding disorders. To learn more about our Hope for Her Future initiative and available resources, visit:https://www.hopeforhemophilia.org/hopeforherfuture.htmlThis conversation offers practical tools for women, caregivers, and families navigating bleeding disorders—from documentation habits to stronger advocacy language and long-term joint protection.If you know a woman who has ever been told “it can’t be that,” send her this episode. Follow the podcast and help us continue bringing visibility to women and girls with bleeding disorders.Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org. Support the show

We explore how to become a self-learner in hemophilia, from adherence and refills to evaluating factor, non-factor, and gene therapies. Jorge shares candid lessons on transition to adulthood, community support, and choosing treatments that fit real life.• Why ownership of care decisions matters• Adherence as daily practice and mindset• Planning refills and emergency doses with pharmacy• Signals it may be time to review medication• Comparing standard, extended, non-factor and gene therapy• Using lifestyle fit as a decision lens• Learning at chapter and national events• Guidance and hope for newly diagnosed families• Building a comprehensive support networkBe part of the conversation at Emerging Therapies, February 24–25. Register now at hopeforhemophilia.org/emerging-therapiesSupport the show

We explore how HR1, a prolonged shutdown, and agency reshuffles affect access, affordability, and safety for people with rare and chronic conditions. With Dane Christensen and Jim Romano, we translate the DC process into patient wins and outline how your story drives change.• HR1’s budget mechanics and phase-in effects on healthcare• Medicaid redeterminations and benefit generosity pressures• Blood safety funding is maintained, but the advisory body is dormant• Shutdown delays to bipartisan health bills and why it matters• Premium tax credits, discharge petition, and likely compromise• PBM reform judged by out-of-pocket costs, not headlines• Insurer tactics on third-party aid and accumulators• Patient choice in specialty pharmacy and continuity of care• How to brief Congress with clear, factual stories• 2026 priorities and steady, incremental advocacyJoin us for Hope on the Hill, June 10–11. Share your story or get involved: [email protected]. Learn more at hope-charities.org. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org.🎧 Hit play, share with a friend, and don’t forget to follow! Every listen helps us get these conversations to more people who need them.Support the show

Jonathan James sits down with Dr. Akshat Jain to address the community’s questions following news of a serious adverse event in an extended trial of a new therapy, Marstacimab. They discuss Pfizer’s transparency, the careful investigative process ahead, and how patients can approach this information through open dialogue with their physicians. Dr. Jain provides an important clinical perspective and emphasizes shared decision-making when exploring treatment options.Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org.🎧 Hit play, share with a friend, and don’t forget to follow! Every listen helps us get these conversations to more people who need them.Support the showSupport the show

A candid conversation with Connie Montgomery charts a lifetime of being dismissed, the car accident that unlocked a Factor VII diagnosis, and the fight to secure prophylaxis. We spotlight bias, culture, and the power of narrative medicine to change outcomes for women with bleeding disorders.• Growing up with unexplained bruising and nosebleeds• Gullah Geechee cultural privacy and silence• Repeated dismissal by clinicians and loss of trust• Heavy menstrual bleeding through two pregnancies• Diagnosis after an ER doctor listened and consulted• Phenotype over lab numbers in rare bleeding care• Securing prophylaxis and navigating insurance barriers• Building trust and health literacy with care teams• Organizing patient power and industry accountability• Compassion that moves beyond empathy into actionHelp us reach more listeners! Share this episode with your friends and family so no one feels alone. And if you haven’t yet, please like and subscribe. It makes a big difference in getting this content in front of others.Special Thanks to Genentech for sponsoring this episode.Support the show

We trace Amanda’s journey from helping her dad infuse to raising two kids while navigating her own diagnosis as an affected woman. The conversation moves from missed signs and medical pushback to advocacy, testing for girls, community support, and practical tools that empower families.• growing up with a dad with severe hemophilia A • invisible symptoms in teen years and surgery complications • being told “just a carrier” versus getting a real diagnosis • marriage, military life, and finding the right HTC • parenting a daughter who is a carrier and a son with severe hemophilia • the role of community events, conferences, and social media • documenting bruises, bleeds, and periods to advocate for care • mental health, exercise, and therapy as caregiver essentials • navigating public life with an invisible disease • future of treatment, gene therapy, and a hopeful outlookIf you haven't already, make sure that you like and subscribe to our channel so that we can continue to provide more educational content just like this!Special Thanks to Genentech for sponsoring this episode.Support the show

Ever wondered how a bruised toddler grows up to be a hematologist changing the game for women with bleeding disorders? Dr. Danielle Nance takes us on that journey full of aha moments, hard truths, and some laugh-through-the-tears stories.We’ll chat about missed diagnoses, why words matter, the battle of factor vs painkillers, what imaging really shows, and how to prep for clinic visits like a pro. Plus: parenting through needles, navigating insurance hoops, and building trust with providers (without losing your mind).🎧 Hit play, share with a friend, and don’t forget to follow! Every listen helps us get these conversations to more people who need them.Special thanks to Genentech for sponsoring this episode of the Hope Unmuted Podcast!Support the show

Dr. Mattie Feldman, rheumatologist and healthcare policy expert, exposes how Pharmacy Benefit Managers have evolved from administrative entities into powerful forces that control medication access, often prioritizing profits over patients.• Pharmacy Benefit Managers (PBMs) originally handled prescription coverage but now control what medications doctors can prescribe and patients can access• The "big three" PBMs—CVS Caremark, OptumRx, and Express Scripts—now control 80-85% of all prescriptions in the United States• PBMs often prefer higher-priced medications because they generate larger rebates, contributing to rising drug costs• Vertical integration has created conflicts of interest where the same companies own insurance plans, PBMs, specialty pharmacies, and sometimes even drug manufacturing• Utilization management tools like step therapy and prior authorizations have become barriers between doctors and patients• PBMs force patients to use mail-order specialty pharmacies that often provide inferior care compared to community specialty pharmacies• Legislators are working on bipartisan bills like "People Before Monopolies" that would require PBMs to divest from pharmacy ownership• Patient stories and advocacy are crucial for creating meaningful change in the healthcare systemShare your pharmacy access or medication challenges with us by emailing [email protected] to help drive policy change.Support the show

This episode focuses on the often-overlooked experiences of women with bleeding disorders. Dr. Akshat Jain discusses the importance of advocacy, the need for gender-sensitive healthcare approaches, and how quality of life relates to treatment accessibility, emphasizing the urgency of creating a supportive environment for patients. • Dr. Jain’s background and expertise in bleeding disorders • Advocacy importance for women with bleeding disorders • Cultural stigmas and challenges women face in seeking care • Quality of life concerns in the context of bleeding disorders • The role of mental health support in comprehensive care • Managing pregnancy risks in women with bleeding disorders • The necessity of community advocacy and proactive outreachSupport the show

In this podcast episode interview,  our host Jonathan James discusses the challenges and critical changes needed to improve the diagnosis and access to treatment for women with bleeding disorders with Dr. Tamuella Singleton. In this conversation, we discuss important questions such as:"What steps are being taken to improve equity and access to healthcare for women and underserved populations?","What role does genetic testing play in diagnosing and managing bleeding disorders?""How can patients and healthcare providers better advocate for comprehensive care and education?""What are your hopes for future research and legislative changes impacting people with rare bleeding disorders?"#hemophilia #bleedingdisorders #vwd #vonwillebranddisease#womenbleedtoo#podcast #chornicillness#rarediseasesSupport the show

What if the key to saving countless women's lives is understanding their monthly cycles? Join us for an eye-opening conversation on the Hope Podcast with Dr. Bivin Von Almen, an esteemed obstetrician with over 30 years of experience. From his journey through the medical landscapes of Texas and Louisiana to his impactful work at Charity Hospital, Dr. Von Almen brings invaluable insights into the often misunderstood world of women with bleeding disorders. We unpack the stark reality of these conditions, like von Willebrands disease, which often go undiagnosed, leaving many women to suffer in silence.Imagine the anguish of undergoing unnecessary hysterectomies or enduring severe health issues simply because of a lack of awareness. Our conversation takes a deep dive into the barriers these women face, particularly in rural healthcare settings, and highlights the crucial role of family history in diagnosis. Dr. Von Almen passionately discusses the importance of education among obstetricians and the life-saving potential of pre-treatment with factor therapy. Stories of patient persistence and self-advocacy are powerful reminders of the need for informed and proactive healthcare management.Dr. Von Almen also shares his heartfelt reasons for joining Hope and his dedication to addressing the underappreciation and mistreatment of women, especially those facing racial disparities. We explore Hope's mission to empower patients with knowledge and advocate for better healthcare outcomes. By connecting with Hope and tapping into resources at hope-charities.org, you can join this vital movement and make a difference in your health journey. Don't miss this compelling episode that educates and inspires action and change.Support the show

Ivan Giron helped advocate for his daughter Naomi to gain a diagnosis and ongoing treatment after learning more about women having a bleeding disorder. After Ivan realized that his daughter was having abnormal bleeding during her minstrel cycle each month, they started to educate themselves on how the genetic disorder could be passed down to his daughter, and while it looked different for her than it did for him, her need for treatment became more focused after further research. Ivan and Naomi have grown closer together as a family and are now on a mission to advocate for other women to challenge outdated clinical standards for women with bleeding disordersThis episode was made possible by an unrestricted educational grant provided by Genentech. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. Audio versions of this podcast are available on Spotify, Apple, iHeart radio and anywhere you listen to podcasts. Subscribe to our podcast to listen to more inspiring interviews like this today. Spotify:https://open.spotify.com/show/7mHb8FnlHmOz0PBcv6kQ8p?si=hlBA_VPsTmaJTbOmkQyvNgApple:https://podcasts.apple.com/us/podcast/hope-charities/id1613823273iHeart:https://www.iheart.com/podcast/269-hope-charities-93979933/#chronicillness#bleedingdisorders #WomenBleedToo #youarenotalone#hemophilia #HemoGlo#advocate#healthcareSupport the show

Claudio Sandoval will share insights on “The Knee: The "Target" Joint” in his session on Sept 26th at 1:00 PM (CST).Join us for our upcoming Joint Health Conference Online on Sept 26th & 27th, sponsored by Octapharma. We are holding this event to discuss how to prevent joint disease and improve long-term outcomes. This free event will be full of great educational sessions where you will hear from experts in Physical Therapy, Ultrasound, Pain Management, Pharmacokinetics, and Mental Health.REGISTER NOW for free access to all live sessions, where we will discuss this topic and many more, as well as live Q&A  with our expert speakers! https://www.hopeforhemophilia.org/joint-health-conference-2023.htmlHope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. #JointHealth#bleedingdisorders #hemophilia #Octapharma #FactorVIII#FVIIISupport the show

Kevin Griggs will share insights on “Hemarthrosis: Blood Where it Shouldn't Be” in his session on Sept 26th at 10:15 AM (CST).Join us for our upcoming Joint Health Conference Online on Sept 26th & 27th, sponsored by Octapharma. We are holding this event to discuss how to prevent joint disease and improve long-term outcomes. This free event will be full of great educational sessions where you will hear from experts in Physical Therapy, Ultrasound, Pain Management, Pharmacokinetics, and Mental Health.REGISTER NOW for free access to all live sessions, where we will discuss this topic and many more, as well as live Q&A  with our expert speakers! https://www.hopeforhemophilia.org/joint-health-conference-2023.htmlHope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. #JointHealth#bleedingdisorders #hemophilia #Octapharma #FactorVIII#FVIIISupport the show

Fernando Reyes will share insights on “Improve Your Mental & Physical Health: Thought, Exercise, and Diet” in his session on Sept 27th at 10:15 AM (CST).Join us for our upcoming Joint Health Conference Online on Sept 26th & 27th, sponsored by Octapharma. We are holding this event to discuss how to prevent joint disease and improve long-term outcomes. This free event will be full of great educational sessions where you will hear from experts in Physical Therapy, Ultrasound, Pain Management, Pharmacokinetics, and Mental Health.REGISTER NOW for free access to all live sessions, where we will discuss this topic and many more, as well as live Q&A  with our expert speakers! https://www.hopeforhemophilia.org/joint-health-conference-2023.htmlHope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. #JointHealth#bleedingdisorders #hemophilia #Octapharma #FactorVIII#FVIIISupport the show

In this podcast Jonathan James discusses upcoming event plans and patient resources with Joe Ferguson, Tesia Nagorka, and Suzi Cannon. Registration for upcoming events can be found on our website at www.hope-charities.org. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. Audio versions of this podcast are available on Spotify, Apple, and anywhere you listen to podcasts. Subscribe to our podcast to listen to more inspiring interviews like this today. Spotify:https://open.spotify.com/show/7mHb8Fn...Apple:https://podcasts.apple.com/us/podcast...iHeart:https://www.iheart.com/podcast/269-ho...#chronicillness#bleedingdisorders #youarenotalone#hemophilia #financialassistance #MentalHealth#advocate#healthcareSupport the show

Rodney Dalrymple shares his journey of living with Hemophilia and overcoming the challenges of treatment with an inhibitor. In this podcast episode we discuss the importance of overcoming the mental challenges associated with growing up with a rare disease, and the vital role of your support systems in community, family and faith. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. Audio versions of this podcast are available on Spotify, Apple, and anywhere you listen to podcasts. Subscribe to our podcast to listen to more inspiring interviews like this today. Spotify:https://open.spotify.com/show/7mHb8FnlHmOz0PBcv6kQ8p?si=hlBA_VPsTmaJTbOmkQyvNgApple:https://podcasts.apple.com/us/podcast/hope-charities/id1613823273iHeart:https://www.iheart.com/podcast/269-hope-charities-93979933/#chronicillness#bleedingdisorders #youarenotalone#hemophilia #financialassistance #MentalHealth#advocate#healthcareSupport the show

In this episode, Jonathan James interviews Maxwell Hunter who is a quality assurance expert in plasma collection. He shares about current therapies available, technology changes, and product safety. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. Support the show

In this episode, we talk about the history of the Hemophilia community and the many transitions of treatment and therapy through the last 30 years in the United States. Trish Underland's background as a nurse care coordinator at the Hemophilia & Bleeding Disorders Treatment Center at Johns Hopkins HTC shares her experiences of working with patients to improve outcomes. Trish provides an excellent perspective on the important role that plasma-derived products and PK studies play for people with bleeding disorders and the vital role patients play in choosing their products and working together as a team with their providers.Support the show

When most people are diagnosed with a rare disease like Hemophilia it is common to experience fear of the unknown, but when that diagnosis happens overseas in a foreign country with doctors and nurses who don't speak your language the uncertainty is insurmountable. In this episode, Jonathan James interviews Brittnee Vasil who was living overseas with her husband while deployed in the Navy and experienced the most frightening time of her life. She shares her story and how she overcame such insurmountable odds all while keeping her faith.   Support the show

Your personal information is protected by The Health Insurance Portability and Accountability Act of 1996 (HIPAA). In this podcast, our host Jonathan James does a deep dive with Greg Webb, HIPAA compliance officer and in-house counsel for Hope Charities, on how to protect your personal health information and what things you would consider when you share your information with others. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. Audio versions of this podcast are available on Spotify, Apple, and anywhere you listen to podcasts. Subscribe to our podcast to listen to more inspiring interviews like this today. Spotify:https://open.spotify.com/show/7mHb8FnlHmOz0PBcv6kQ8p?si=hlBA_VPsTmaJTbOmkQyvNgApple:https://podcasts.apple.com/us/podcast/hope-charities/id1613823273iHeart:https://www.iheart.com/podcast/269-hope-charities-93979933/#chronicillness#bleedingdisorders #youarenotalone#hemophilia #mentalhealth#suicide#suicideprevention#advocate#healthcareSupport the show

“Financial Assistance Legislative Challenges”In Episode 6 Jonathan James and James Romano have an important discussion about many of the legislative challenges facing people who need financial assistance while living with a rare or chronic disease like Hemophilia. James talks about the copayment accumulator, third party payments and many other issues that directly impact the financial assistance people are able to receive when living with a rare disease. James is the executive director for United for Charitable Assistance Coalition and the Hope Charities legislative consultant. You can learn more about the important work UCA is doing at www.unitedforcharitableassistance.org.Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. Audio versions of this podcast are available on Spotify, Apple, and anywhere you listen to podcasts. Subscribe to our podcast to listen to more inspiring interviews like this today. Spotify:https://open.spotify.com/show/7mHb8FnlHmOz0PBcv6kQ8p?si=hlBA_VPsTmaJTbOmkQyvNgApple:https://podcasts.apple.com/us/podcast/hope-charities/id1613823273iHeart:https://www.iheart.com/podcast/269-hope-charities-93979933/#chronicillness#bleedingdisorders #youarenotalone#hemophilia #financialassistance #suicide#advocate#healthcareSupport the show

Living with Hemophilia is no easy road and the unsung heroes of anyone living with a rare or chronic condition are the family that surrounds them. Hannah James joins her Dad Jonathan James in an unplugged interview to talk about growing up as a daughter of someone living with hemophilia. In this episode, we cover important issues like a Child's perspective of watching their Dad struggle at times with the limitations of hemophilia and other topics like what it’s like growing up being involved in the bleeding disorders community. Support the show

There is no better way to connect with family or friends than to spend time enjoying food with one another. In this episode, Jonathan James and Brad Creel talk with Food Network host and world-renowned author and food expert Simon Majumdar to discuss the important ways that food brings happiness, community, and health to our lives. Support the show

In Episode 3 Jonathan James and Lori Bienvenu, LPC sit down with suicide survivor Emma Benoit to have an important conversation about #MentalHealth and suicide prevention. Emma shares her story of surviving a suicide attempt and her undiagnosed depression and anxiety and the lessons she learned on her journey. Emma shares her story in the documentary “My Ascension” and speaks to students and adults about the important role of mental health and how to be aware of the warning signs. You can learn more about the movie at www.myascension.us. Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs visit our website www.hope-charities.org. Audio versions of this podcast are available on Spotify, Apple, and anywhere you listen to podcasts. Subscribe to our podcast to listen tomore inspiring interviews like this today. Support the show

In episode two of the Hope Charities Podcast, Jonathan and Stephen sit down and talk about many of the aspects of living with a bleeding disorder from the perspective of the patient. In addition they talk about what that looks like on preventative treatment. You really don't want to miss out on this episode of our podcast so we hope you tune in, take notes and remember, as they say, " You are not alone."Support the show

In episode one of the Hope Charities podcast, Jonathan James (CEO) invites Lesley Lamarie to discuss some aspects of prophylaxis and life for the hemophilia and bleeding disorder community.  Make sure to tune in and don't forget to register for Prophy Conference March 10-12, 2022. Registration is still open so don't miss out!Support the show