 Finding Light Together in Uncertain Times Living in a region shaped by hurricanes, I’ve seen firsthand how storms can leave behind unimaginable damage. I’ve walked through the trauma of losing a home—more than once—and I know the kind of pain that doesn’t just go away. But I’ve also witnessed something remarkable: in the aftermath of the storm — a community coming together, lifting one another up, and shining brighter than the darkness. Right now, in our bleeding disorder community, we are facing a different kind of storm. From policy shifts that threaten access to vital medications, to the closure of the Blood Safety Division at HHS, to rising anxiety about potential global conflict—a lot is weighing on us. Social media and the news seem to offer a steady stream of heartbreak. It’s no wonder so many are feeling overwhelmed, distressed, and more vulnerable than ever. And yet—two things can be true. We can feel the weight of the storm and still choose to link arms with others. We can be marked by trauma, and still be moved to find hope. In the darkest of times, community becomes our strength, and together, we become a light for change. At Hope Charities, we are committed to walking with you through every part of this journey. Whether it’s offering financial assistance, emotional support, or a platform for your voice in healthcare policy—we’re here. We believe in showing up, day after day, to help families move from fear to strength, from isolation to community, and from crisis to hope. We don’t pretend that everything is okay. But we do believe that together, we can build something better. By choosing connection over isolation, and by getting involved and staying engaged, you become a part of the solution that we need right now. If you’re feeling overwhelmed, we see you. If you’re feeling helpless, we hear you. Know that you are not alone. Stay connected. Stay hopeful. And if you’re ready to be part of something that brings light into the darkness, we invite you to get involved today. Let’s build something beautiful together! - Jonathan James, President/CEO Hope Charities What’s Ahead in Q3 Registration opens soon for Hope Conference 2025! von Willebrand Disease (vWD) One-Day Conference – Join us online July 16th - https://www.hopeforhemophilia.org/advancing-vwd-management.html Upcoming Hope Sessions:
Hope Factor Special Issue: Resource & Product Guide
Stay connected for more details, registration links, and ways to get involved!  Advancing vWD Management Wednesday, July 16 Join us online on July 16th for a day of education focusing solely on von Willebrand disease. This event will feature disease education, treatment, and community building! If you’d like to learn more about vWD or connect with other patients, this event is for you. REGISTER NOW  HOPE CONFERENCE 2025 |
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2025 Is Off to a Fast Start!
It feels like we just welcomed the new year, and now we’re wrapping up the first quarter! Time flies when there’s so much happening at HOPE.
We kicked off the year with our annual Staff Development Retreat,where we focused on strategy, team building, and planning for the year ahead. In February, we hosted our first live online patient education conference, Emerging Therapies—with 375 registrants averaging 114 attendees per breakout session!
This event highlighted groundbreaking advancements in bleeding disorder treatments, and many of the sessions are now available on our YouTube channel. Be sure to subscribe and catch up on any you missed!
Our monthly HOPE Sessions continue to grow, with participation up 20% from last year! These live webinars connect our community, provide key updates on treatment and support, and include fun giveaways. So far, we’ve hosted three sessions this year, averaging 60 attendees each. Check out our website for upcoming topics!
Advocacy & Policy Updates
In March, we met with 11 legislative offices in Washington, D.C. to advocate for policies supporting the bleeding disorders community. I also had the privilege of joining my local chapter, LHF, to meet with state legislators in support of the HELP CoPays Act.
Additionally, I attended MASAC to stay informed on the latest policy and clinical guidance, and I was honored to speak at the Patient Assistance Program (PAP) conference in Philadelphia about the dangers of Alternative Funding Programs (AFPs), which are limiting patient access to medications. You can read more about our research on AFPs here. I also had the privilege of facilitating a panel discussion with leadership from the PAN Foundation and Help, Hope, Live on the impact of charitable donations for financial aid programs historically.
Financial Assistance & Community Support
Our Financial Assistance team has been working diligently, processing 344 patient assistance requests and distributing over $363,050 in financial aid to individuals facing hardship. The resilience of our community is inspiring, and we are committed to standing by those in need.
One recent story truly hit home:
In January, we assisted a man with Hemophilia A and inhibitors had been experiencing active bleeds. His HTC worked tirelessly to adjust his dosing, but the bleed left him unable to use his hand. On top of this, chronic arthritis from years of uncontrolled joint bleeds caused unbearable pain in his knees and ankles.
Despite his struggles, he and his wife rely on their small business to make a living. But when he couldn’t work, it caused him to get behind on his bills. Hope was able to approve financial assistance for his rent for one month alleviating some of the financial strain. Overwhelmed with gratitude, he shared their heartfelt thanks with everyone who helped them through this difficult time.
While we are making progress on serving the financial needs of our community, we still have more people in need than we have resources to meet the demand. This past quarter we were thankful to meet 58% of the need requested from our DPA program, but there many more people who need our help.
To meet the growing need, we’re launching $25 for ‘25—a campaign encouraging supporters to give $25 per month to sustain our assistance programs. Every dollar donated by individuals goes 100% directly to patient aid. If you’re able to contribute, now is the time to make an impact. Learn More
What’s Ahead
There’s so much more to come! Mark your calendars:
It feels like we just welcomed the new year, and now we’re wrapping up the first quarter! Time flies when there’s so much happening at HOPE.
We kicked off the year with our annual Staff Development Retreat,where we focused on strategy, team building, and planning for the year ahead. In February, we hosted our first live online patient education conference, Emerging Therapies—with 375 registrants averaging 114 attendees per breakout session!
This event highlighted groundbreaking advancements in bleeding disorder treatments, and many of the sessions are now available on our YouTube channel. Be sure to subscribe and catch up on any you missed!
Our monthly HOPE Sessions continue to grow, with participation up 20% from last year! These live webinars connect our community, provide key updates on treatment and support, and include fun giveaways. So far, we’ve hosted three sessions this year, averaging 60 attendees each. Check out our website for upcoming topics!
Advocacy & Policy Updates
In March, we met with 11 legislative offices in Washington, D.C. to advocate for policies supporting the bleeding disorders community. I also had the privilege of joining my local chapter, LHF, to meet with state legislators in support of the HELP CoPays Act.
Additionally, I attended MASAC to stay informed on the latest policy and clinical guidance, and I was honored to speak at the Patient Assistance Program (PAP) conference in Philadelphia about the dangers of Alternative Funding Programs (AFPs), which are limiting patient access to medications. You can read more about our research on AFPs here. I also had the privilege of facilitating a panel discussion with leadership from the PAN Foundation and Help, Hope, Live on the impact of charitable donations for financial aid programs historically.
Financial Assistance & Community Support
Our Financial Assistance team has been working diligently, processing 344 patient assistance requests and distributing over $363,050 in financial aid to individuals facing hardship. The resilience of our community is inspiring, and we are committed to standing by those in need.
One recent story truly hit home:
In January, we assisted a man with Hemophilia A and inhibitors had been experiencing active bleeds. His HTC worked tirelessly to adjust his dosing, but the bleed left him unable to use his hand. On top of this, chronic arthritis from years of uncontrolled joint bleeds caused unbearable pain in his knees and ankles.
Despite his struggles, he and his wife rely on their small business to make a living. But when he couldn’t work, it caused him to get behind on his bills. Hope was able to approve financial assistance for his rent for one month alleviating some of the financial strain. Overwhelmed with gratitude, he shared their heartfelt thanks with everyone who helped them through this difficult time.
While we are making progress on serving the financial needs of our community, we still have more people in need than we have resources to meet the demand. This past quarter we were thankful to meet 58% of the need requested from our DPA program, but there many more people who need our help.
To meet the growing need, we’re launching $25 for ‘25—a campaign encouraging supporters to give $25 per month to sustain our assistance programs. Every dollar donated by individuals goes 100% directly to patient aid. If you’re able to contribute, now is the time to make an impact. Learn More
What’s Ahead
There’s so much more to come! Mark your calendars:
- Prophy Online Conference - May 20-21
- Hope on the Hill – June 3-5
- Hope Conference – November 6-8, Orlando
Your $25 can help families in the bleeding disorders community meet basic needs during tough times. Watch this video to see how your support makes a difference.
Hope Sessions
APRIL 23
1 PM CST
HYMPAVZI: An innovative treatment approach for eligible patients with hemophilia A and B without inhibitors
Learn about HYMPAVZI (marstacimab-hncq) and the patient experience, with Dr. Davide Matino, MD, MSc and Peter Fischer, HYMPAVZI clinical trial patient
Speakers:
Dr. Davide Matino, MD, MSc; Associate professor of medicine, McMaster University, MU Medical Center Hemophilia Clinic, and Thrombosis Clinic at the Juravinski Hospital and Peter Fischer, HYMPAVZI clinical trial patient
This session is sponsored by Pfizer
1 PM CST
HYMPAVZI: An innovative treatment approach for eligible patients with hemophilia A and B without inhibitors
Learn about HYMPAVZI (marstacimab-hncq) and the patient experience, with Dr. Davide Matino, MD, MSc and Peter Fischer, HYMPAVZI clinical trial patient
Speakers:
Dr. Davide Matino, MD, MSc; Associate professor of medicine, McMaster University, MU Medical Center Hemophilia Clinic, and Thrombosis Clinic at the Juravinski Hospital and Peter Fischer, HYMPAVZI clinical trial patient
This session is sponsored by Pfizer
Prophy Conference
MAY 20-21
Join us online via Zoom for some amazing sessions and conversations about how to stay inspired to keep going with your preventative treatment regimen. You will have the opportunity to meet individuals and families from around the country who live with a bleeding disorder, win some amazing prizes, and learn from some incredible speakers. You must register to get all the information and updates on how to join each Zoom session.
LEARN MORE
Join us online via Zoom for some amazing sessions and conversations about how to stay inspired to keep going with your preventative treatment regimen. You will have the opportunity to meet individuals and families from around the country who live with a bleeding disorder, win some amazing prizes, and learn from some incredible speakers. You must register to get all the information and updates on how to join each Zoom session.
LEARN MORE
Hope Conference
Catch Up on Unmuted: Honest Conversations About Bleeding Disorders, Rare Diseases, and Chronic Illnesses
Did you miss an episode of Unmuted this quarter? Now’s the perfect time to catch up! Our latest episodes dive into powerful stories, expert insights, and real conversations about life with bleeding disorders, rare diseases, and chronic illnesses.
Don’t miss out—watch now and be part of the conversation:
Did you miss an episode of Unmuted this quarter? Now’s the perfect time to catch up! Our latest episodes dive into powerful stories, expert insights, and real conversations about life with bleeding disorders, rare diseases, and chronic illnesses.
Don’t miss out—watch now and be part of the conversation:
Emerging Therapies
Thank you everyone who attended our Emerging Therapies event! We appreciate your time and engagement as we explored the latest advancements in bleeding disorder treatment. Our goal was to provide you with the information needed to make the most informed decisions about your treatment options.
Above, you’ll find data on attendance and key takeaways from the event. We’re grateful for your participation and look forward to continuing this important conversation with you!
Above, you’ll find data on attendance and key takeaways from the event. We’re grateful for your participation and look forward to continuing this important conversation with you!
THANK YOU ETC 2025 SPONSORS!
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