New England Hemophilia Association

06/12/2026

With the World Cup now underway across North America and Team USA taking the field tonight, soccer is top of mind for us!

Join us for NEHA Night with the New England Revolution at Gillette Stadium on Saturday, September 19. All NEHA attendees will be seated together, and $10 from every ticket purchased through our link will be donated directly to NEHA. Learn more and secure your tickets today: www.newenglandhemophilia.org/events/revs26

06/11/2026

The John W. Cavanaugh Adult Education Scholarship supports individuals pursuing their educational goals, and we're proud to recognize Maggie Rodriguez as one of this year's two recipients!

Maggie’s son has hemophilia. Since moving to New England, their entire family have become active members of our community by attending events, leading a Walk Team, and finding ways to connect with others. This scholarship will support her pursuit of an MBA in Organizational Management, helping her take the next step in her professional journey.

06/10/2026

Summer travel season is here, and for those with bleeding disorders, a little preparation can go a long way toward ensuring a safe and stress-free trip.

In our latest newsletter, Kate shares her family's unforgettable journey from Boston to Australia and how thoughtful planning, close coordination with their HTC, and a few extra supplies gave them the confidence to travel halfway around the world. Read their family’s story and pick up helpful tips to make your own summer adventures a success: bit.ly/ks-sp26

06/08/2026

As college students begin planning for the new school year in the fall, we're proud to celebrate Darian Ross as one of two recipients of this year's John W. Cavanaugh Adult Education Scholarship.

Darian's energy, charisma, and enthusiasm are contagious to all who are in his presence. As a leader and counselor at NEHA's Family Camp for more than 10 years, he has served as a role model for countless young people with hemophilia, showing them what is possible through confidence, perseverance, and leadership. With support from this scholarship, Darian will return to school to pursue a bachelor's degree in Information Technology. We can't wait to see all that he accomplishes next. Congratulations, Darian!

06/05/2026

Most people can't pronounce afibrinogenemia on the first try, but Bridget has spent a lifetime teaching people how. Diagnosed with this extremely rare bleeding disorder as a newborn, she has spent her life advocating for herself while dealing with both bleeding and clotting complications.

In our latest newsletter, Bridget shares her journey and reflects on the importance of self-advocacy, mental health, and trusting yourself when something doesn't feel right. She also explores how finding support within the bleeding disorders community has helped her transform challenges into opportunities to educate, connect, and inspire others. Read her story: bit.ly/be-sp26

06/04/2026

Today's beautiful weather has us counting down to summer!

Join us on Saturday, July 25, for a day of fun, connection, and learning with the bleeding disorders community. We'll kick off the day with educational sessions before heading to Six Flags New England in Springfield, MA for an afternoon of thrills, laughter, and time together.

Whether you're looking to learn something new, connect with other families, or simply enjoy a great summer day, this event has something for everyone. Limited spots remain—register today: www.newenglandhemophilia.org/events/fam26-south

06/04/2026

For far too long, it has been thought that only men can have bleeding disorders. As a result, women and girls have often faced delayed diagnoses, barriers to appropriate care, and limited inclusion in clinical research.

Rep. Julie Johnson (D-TX) and Rep. Joe Wilson (R-SC) have introduced H.R. 8794, the Fostering Effective Diagnosis and Treatment for Underserved Populations (FED UP) with Bleeding Disorders Act of 2026. The bipartisan bill calls for a federal review of programs and initiatives related to research, provider education, access to care, and clinical trial participation for women and girls with bleeding disorders. The findings would inform recommendations and a national public awareness campaign to improve recognition, diagnosis, and treatment.

This legislation was a key advocacy priority for our community during Washington Days earlier this year. Click below to take part in the National Bleeding Disorders Foundation (NBDF) Action Alert to urge your Member of Congress to become a cosponsor of H.R. 8794. Take action: https://bit.ly/4dQ1N7a

🚨 Action Needed

Women and girls with bleeding disorders continue to face delayed diagnoses, barriers to care, and research gaps.
Help change that.

Ask your Representative to cosponsor the bipartisan FED UP with Bleeding Disorders Act (H.R. 8794), legislation designed to improve diagnosis, treatment, research, and awareness for women and girls living with bleeding disorders. Joe Wilson Representative Julie Johnson

📧 Take action today: https://bit.ly/4dQ1N7a

06/03/2026

Looking for plans for this weekend?

Join us at Baramor in Newton Centre, MA, to help us decide which Boston-area bar has the best bloody mary!

Buy your ticket:

You're invited to attend our 4th Annual Best Bloody Mary Competition on Sunday, June 7 at 11 AM at Baramor in Newton Centre, MA.

05/29/2026

For the past decade, NEHA community members have attended the Youth Effectively Transitioning to Independence (YETI) conference in Oregon to learn new ways to support and engage young people in the bleeding disorders community.

YETI gives attendees hands-on experience with activities, leadership development, and event planning strategies that can be brought back home and adapted for local programming. Many of the interactive experiences our community now enjoys—like fashion show activities at Family Camp and independent cooking at the BLeaders Teen Retreat—were inspired by ideas first explored at YETI.

In our latest newsletter, NEHA’s Program Director, Sarah Shinkman explains how opportunities like YETI strengthen NEHA’s programming and help us create meaningful experiences for teens and families across New England. Read the article: bit.ly/yeti-sp26

05/27/2026

Next Friday, June 5, we're hosting a fun night of Virtual Reality Games after dinner in North Haven, CT!

We’ll start the night at Bellini’s Restaurant, where you’ll hear about Sanofi’s treatment options for hemophilia A and B while enjoying dinner with the community. Then, we’ll head down the road to Xperiment Virtual Reality for immersive, interactive VR adventures. From exploring new worlds to battling alien invaders, there’s something for everyone to enjoy. Sign up below.

On Friday, June 5, we are hosting an educational dinner at Bellini’s Restaurant in North Haven, CT, followed by an evening of virtual reality games nearby at Xperiment Virtual Reality.