Hope for Hemophilia

06/15/2026

Lawmakers see countless reports and policy briefs. What they remember are the stories behind them.

Last week, Hope on the Hill advocates met with members of Congress to discuss issues affecting access to care for people living with bleeding disorders and rare diseases.

That’s why our advocates shared their experiences and helped ensure patient voices remained at the center of healthcare conversations. Every story shared was an opportunity to educate, inspire, and advocate for meaningful change.

06/11/2026

Last night, Hope on the Hill advocates gathered in Washington, D.C. to prepare for a powerful day of advocacy.

Today, patients, caregivers, and families will meet directly with lawmakers to share how healthcare policies impact real lives. Behind every policy discussion is a person, a family, and a story worth hearing.

Stay tuned as we bring Hope on the Hill 2026 to Capitol Hill.

06/08/2026

The diagnosis is there. The records are there. The doctor has prescribed the treatment.

Yet too often, pharmacy benefit managers and insurance companies still say no.

In this clip, Brittany Gillespie shares the frustration of having all the proof you need and still being forced to fight for access to care.

Stories like this are why we are headed to DC to advocate.

Watch the full story here: https://youtu.be/mJD9iPEOmZ4?si=02qm4BJZ9-uEM8ew

05/29/2026

As Mental Health Awareness Month comes to a close, we’re highlighting a conversation that reminds us why these discussions matter.

In our newest Hope Unmuted episode, Jonathan James sits down with Debbie De La Riva to explore the emotional realities of living with a bleeding disorder, including trauma, anxiety, caregiver burnout, and the pressure to always appear strong.

Mental health matters too. Listen now https://youtu.be/8YB7T24jlnk?si=ZQwfIo6qRecjDtFZ 🎙️

05/29/2026

A Word From Our Sponsor:
Learn how Sanofi is reshaping the future of hemophilia treatment: https://bit.ly/42BMOrT

05/28/2026

Changing the Narrative for Women 💜

Join us July 28–29 for a two-day virtual event created to support, educate, and empower women in the bleeding disorders community.

Hear from experts, connect with others, and gain tools to better understand and advocate for your health. This event is also for fathers, husbands, caregivers, and advocates because stronger support and stronger advocacy start with awareness and understanding across our entire community.

Whether you are living with a bleeding disorder or supporting someone who is, these conversations matter.

Registration is now open.
https://www.hopeforhemophilia.org/womens-health-conference.html

05/22/2026

Every conversation matters. Every patient story matters.

At Hope Charities, we are committed to advocating for the bleeding disorders community and helping ensure patient voices are heard where important decisions are being made. From access to care to patient choice and affordability, these conversations have real impact on real lives.

This June, we’re heading back to Washington, DC for Hope on the Hill 2026 to continue advocating alongside patients, caregivers, and community members from across the country.

Stay tuned as we prepare for a powerful few days of advocacy on Capitol Hill. 💙

05/19/2026

Hope Session May 20 at 1:00 PM CST! 🔔

“Rewriting the Rules We Put on Ourselves.”

+ A digital scavenger hunt awaits! 🔍🎉

Register now! https://www.hopeforhemophilia.org/hope-sessions

05/18/2026

A Word From Our Sponsor:

Hemophilia community: share insights 🗣️ and let your voice be heard!

Rarity Health is recruiting participants for a 45-minute paid virtual interview to gather feedback on some messages in development. Your insights will help inform how information is shared with patients and families.

Who we’re looking for:
🙋 Adults (18+) with hemophilia A or B (with or without inhibitors), living in the US
🧑‍🧒 Caregivers of children ages 6–18 with hemophilia A or B (with or without inhibitors), living in the US
What to expect:
📧 A quick email response + brief phone call to confirm eligibility
📲 If selected, a scheduled 1:1 virtual interview (45 minutes)

💰 If selected, compensation provided for your time

Interested?
Email [email protected] to get started. Spots are limited, and we’re hoping to fill them quickly, so don’t wait!


The study opportunity is intended solely for educational purposes on the part of Hope Charities.
This opportunity is strictly voluntary on your part and your participation in the study has no effect on your current or future eligibility for, or participation in, any program or service offered by Hope Charities, Inc.
Please note that the referenced study is fully managed, operated, and funded by a third-party and Hope Charities, Inc. has no control over, and bears no responsibility for, the administration, conduct, or protocols of the study. Hope Charities assumes no responsibility for any of the content and messaging of the study opportunity offered therein.
Publication of this opportunity or study should not be construed or interpreted as an endorsement of any product, service, viewpoint, opinion or medical practice presented or discussed in the study. Any opinion, message or service discussed or presented in the study is determined solely by the third-party sponsor and Hope Charities has no role or authority over the content presented therein.
Please be advised that participation is limited and if you satisfy the eligibility criteria, you will be contacted with additional information, at which time you may consent or decline participation.

05/13/2026

A Word From Our Sponsor:

Painful injections? Soreness? Bruising? to your doctor about treatment administration challenges! Find out more at https://www.speakyourhemtruth.com/bleeds-still-happen.html

© 2026 Novo Nordisk All rights reserved. US26HRBD00025 February 2026

Read information on breakthrough bleeds, different ways to treat hemophilia A with or without inhibitors, and find talking points to help deepen your conversations with your doctor.