For full Prescribing Information for VONVENDI, please visit: [https://takeda.info/3RMfhbp]. A bleeding disorder is part of someone’s story — but it is not the whole story. 

In this episode of the Hope Podcast, Jonathan James talks with Takeda Community Education Specialists Morgan Cook and Maria Rohan about living with von Willebrand disease, the power of self-advocacy, and why sharing personal experiences can create connection within the bleeding disorders community.  The conversation explores finding your voice, communicating with your healthcare team, and learning more about treatment options, including VONVENDI® [von Willebrand factor (Recombinant)]. 

VONVENDI® [von Willebrand factor (Recombinant)] Important Information  

What is VONVENDI? 

VONVENDI is used in adults and children with von Willebrand disease to: 
   • treat and control bleeding episodes 
   • prevent excessive bleeding during and after surgery 
For adult patients only: 
   • reduce the number of bleeding episodes when used regularly (prophylaxis) 

Detailed Important Risk Information 

Who should not use VONVENDI? 
You should not use VONVENDI if you: 
   • Are allergic to any ingredients in VONVENDI. 
   • Are allergic to mice or hamsters. 

Tell your healthcare provider if you are pregnant or breastfeeding because VONVENDI may not be right for you. 

How should I use VONVENDI? Your first dose of VONVENDI for each bleeding episode may be administered with a recombinant factor VIII as instructed by your healthcare provider. Your healthcare provider will instruct you whether additional doses of VONVENDI with or without recombinant factor VIII are needed. 

What should I tell my healthcare provider before I use VONVENDI? 
You should tell your healthcare provider if you: 
   • Have or have had any medical problems. 
   • Take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements or herbal remedies. 
   • Have any allergies, including allergies to mice or hamsters. 
   • Are breastfeeding. It is not known if VONVENDI passes into your                  milk and if it can harm your baby. 
   • Are pregnant or planning to become pregnant. It is not known if VONVENDI can harm your unborn baby. 
   • Have been told that you have inhibitors to von Willebrand factor                        (because VONVENDI may not work for you). 
   • Have been told that you have inhibitors to blood coagulation factor VIII. 

What else should I know about VONVENDI and von Willebrand Disease? 
Your body can form inhibitors to von Willebrand factor or factor VIII. An inhibitor is part of the body’s normal defense system. If you form inhibitors, it may stop VONVENDI or factor VIII from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for the development of inhibitors to von Willebrand factor or factor VIII.

What are the possible side effects of VONVENDI? 
You can have an allergic reaction to VONVENDI. Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting. 

Side effects that have been reported with VONVENDI include: headache, nausea, vomiting, tingling or burning at infusion site, chest discomfort, dizziness, hot flashes, itching, high blood pressure, muscle twitching, unusual taste, blood clots and increased heart rate. 

Tell your healthcare provider about any side effects that bother you or do not go away. 

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. 

Please see VONVENDI full Prescribing Information [https://takeda.info/3RMfhbp]. 

Subscribe, share this episode with someone who needs to hear it, and join us for more conversations from the bleeding disorders community.

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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Growing up with severe hemophilia A, Patrick James Lynch was told a different story about what his future might look like. Now, reaching middle age, he reflects on what it means to live in a season of life many in his generation weren’t sure they would see.

In this episode of the Hope Podcast, Jonathan James sits down with award-winning filmmaker, patient advocate, and Believe Limited co-founder Patrick James Lynch for an honest conversation about aging with hemophilia, chronic pain, joint damage, surgeries, and learning to navigate a changing body after decades of living with a bleeding disorder.  

Patrick also opens up about losing his younger brother to an untreated head bleed, how grief shaped his mission, and why he believes storytelling can reach people in ways traditional education sometimes cannot.

This episode explores:
• Aging with a bleeding disorder
• Mental health and vulnerability
• The importance of peer support
• The future of treatment and access
• Finding meaning through advocacy

This conversation is a reminder that surviving is only part of the story; finding purpose, connection, and hope is what comes next. 

Connect with Patrick James Lynch & Believe Limited:

Believe Limited – Creating entertainment, education, and experiences for the bleeding disorders community:
https://www.believeltd.com/

BloodStream Media – Podcasts and conversations for the bleeding disorders community:
https://www.bloodstreammedia.com

Follow BloodStream Media on Facebook:
https://www.facebook.com/BloodStreamMedia

Believe Limited Films – Stories created to educate, connect, and inspire:
https://www.believeltd.com/film

Subscribe, share this episode with someone who needs to hear it, and join us for more conversations from the bleeding disorders community.

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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In this powerful episode, Jonathan James sits down with licensed professional counselor, longtime patient advocate, and Mental Health Matters Too founder Debbie De La Riva to pull back the curtain on the hidden mental health realities of living with a bleeding disorder. Together, they explore the anxiety nobody sees, the trauma carried from childhood medical experiences, the pressure to always appear strong, caregiver burnout, and the lasting impact of living with a chronic condition.

As Mental Health Awareness Month comes to a close, this conversation highlights the importance of prioritizing mental health alongside physical health—especially within chronic illness communities. Whether you’re living with a bleeding disorder, caring for someone who is, or supporting others through their journey, emotional well-being deserves attention, support, and open conversation. Learn more about Mental Health Awareness Month at https://mhanational.org/mental-health-month/

Debbie shares how losing members of the bleeding disorders community led her to found Mental Health Matters Too and dedicate her life to helping others feel less alone. Jonathan shares personal stories of PTSD, discrimination, chronic pain, and the emotional exhaustion of always trying to appear normal.
Together, they discuss:

* Why trauma can stay in the body for decades
* The emotional toll of chronic illness
* Why many people hide behind the phrase “I’m fine”
* The importance of purpose, vulnerability, and community
* How healing begins with honest conversations

Looking for mental health resources?

We encourage you to explore Issue 36 of The Hope Factor magazine. Pages 24–25 feature a Mental Health Resource Guide with crisis support services, advocacy organizations, educational tools, and resources designed to support individuals and families affected by bleeding disorders and other chronic conditions.

Access the issue and additional educational resources at:
https://www.hopeforhemophilia.org/

Additional resources include:

• 988 Suicide & Crisis Lifeline – Call or text 988 anytime for free, confidential 24/7 support.

• Crisis Text Line – Text HOME to 741741 to connect with a trained Crisis Counselor 24/7.

• NAMI (National Alliance on Mental Illness) – Offers mental health education, support groups, caregiver resources, and a nationwide HelpLine. Call 800-950-NAMI (6264) or text NAMI to 62640.

This is more than a conversation about mental health.
It’s a conversation about resilience, healing, and finding hope in the moments we share with one another.
 

🎧 Hit play, share with someone who may need this conversation, and don’t forget to follow. Every listen helps more people feel seen, supported, and less alone.

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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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 back

If 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. 

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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 Awareness

Save 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.net

If 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. 

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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 medications

We 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. 

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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 Research

Hope 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.html

This 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. 

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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.

🎧 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.

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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.

🎧 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.

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Support the show