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 network

Be part of the conversation at Emerging Therapies, February 24–25. Register now at hopeforhemophilia.org/emerging-therapies

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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 advocacy

Join 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.

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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.

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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 action

Help 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.

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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 outlook

If 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.

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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).

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Special thanks to Genentech for sponsoring this episode of the Hope Unmuted Podcast!

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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 system

Share your pharmacy access or medication challenges with us by emailing [email protected] to help drive policy change.

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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 outreach

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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
#rarediseases

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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.

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