<![CDATA[HOPE FOR HEMOPHILIA

<![CDATA[HOPE FOR HEMOPHILIA - Newsletters]]>Fri, 17 Apr 2026 21:34:15 -0500Weebly<![CDATA[2025 Second Quarter News & Updates]]>Thu, 31 Jul 2025 18:45:35 GMThttps://www.hopeforhemophilia.org/newsletters/2025-second-quarter-news-updates

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:

July 24 at 7:30pm EST – Presented in Spanish by Sanofi
August – Another engaging session from Sanofi
September – Two insightful sessions hosted by Novo Nordisk

Hope Factor Special Issue: Resource & Product Guide

Check out last year’s edition here and stay tuned for the 2025 release!
Joint Health Conference – Happening September 16–17 Registration coming soon!

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
REGISTRATION OPENING SOON!

We are excited to announce our 2025 Hope Conference, which will take place Nov 6-8, in Orlando, Florida! This is an annual patient education event where people living with bleeding disorders come to learn, grow and develop. Hope Conference is focused on education, empowerment, and community. We are proud to bring a diverse group of attendees living with bleeding disorders from around the United States.

LEARN MORE

$25 FOR ’25
MAKE A DONATION

For many in the bleeding disorders community, the financial burden of ongoing medical care, unpaid time off work, and additional living expenses can lead to devastating outcomes. Families risk losing their homes, struggling to put food on the table, and sacrificing essential needs just to stay afloat.

A $25 donation, whether one-time or monthly, can ease the burden on families in crisis so they can focus on healing instead of survival. Even a little can make a big difference!

ANONYMOUS PATIENT QUOTE:
“I did not see a path forward with everything that was happening in my life. There was only a dark tunnel with no light at the end…until I came to Hope Charities and they were able to help me during one of the darkest periods of my life. Their assistance saved me from losing my life.”

Looking back at Q2

Our Prophy conference was a powerful and inspiring event, and we’re so grateful to everyone who joined us to help make it such a success!

Hope On The Hill
Hope on the Hill 2025 was a huge success! Our community showed up with powerful advocacy, meaningful stories, and unwavering passion.

Check out this short recap video to see highlights from an incredible week on Capitol Hill!

THANK YOU Q2 HOPE SESSION SPONSORS

Hope Factor Magazine
This issue shines a powerful light on the stories of women living with bleeding disorders—stories that have too often been dismissed, misunderstood, or completely ignored.
For decades, the medical narrative told us that hemophilia only affects men. But we now know better. Women not only carry these genetic mutations—they bleed too. And many have spent years fighting for a diagnosis, a treatment plan, and the care they deserve.
In this issue, we’re amplifying the voices of women who were told “it’s normal,” “it’s just heavy periods,” or “you can’t have hemophilia.” They kept asking questions, and in doing so, they’re changing the future of care for all who bleed.

Read Now

🎥 New Videos on Our YouTube Channel!
Catch up on our latest uploads—featuring inspiring stories, educational sessions, and highlights from recent events. Whether you’re looking to learn, connect, or be encouraged, there’s something for you.

]]><![CDATA[2025 First Quarter News & Updates]]>Tue, 29 Jul 2025 16:55:29 GMThttps://www.hopeforhemophilia.org/newsletters/2025-first-quarter-news-updates

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:

Prophy Online Conference - May 20-21
Hope on the Hill – June 3-5
Hope Conference – November 6-8, Orlando

Registration will open soon, so keep an eye on your inbox and our website for details. Thank you for being part of this incredible journey. Together is the way forward.

$25 FOR ’25
MAKE A DONATION

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

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

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:

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!

THANK YOU ETC 2025 SPONSORS!

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