New England Hemophilia Association

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.

05/27/2026

Which Boston area bar pours the best bloody mary? Help us decide during our 4th Annual Boston's Best Bloody Mary Competition on Sunday, June 7!

Join us at Baramor in Newton Center, MA to sample creative Bloody Marys crafted by bartenders from top Boston-area bars, vote for your favorites (best drink and best garnish!), and help crown this year’s champion.

This year, participating bars include: Baramor, Bostonia Public House, La Morra, Craft Food Halls, District 118 Kitchen and Bar, Barlette, and The Friendly Toast!

All proceeds support the New England bleeding disorders community. Buy your tickets today at www.bestbloody.org!

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.

05/26/2026

Heather grew up with NEHA—attending holiday parties, speaking on panels as a teenager, and even helping launch a young adults group. After losing many friends during the contaminated blood crisis of the 1980s, she stepped away for a time to focus on her family and navigate her own health challenges.

Eventually, Heather found her way back to the community she had always considered home. Today, she continues to advocate for women with bleeding disorders, patients with VWD, and the broader bleeding disorders community. In our latest newsletter, Heather shares more about her journey. Read her story at: bit.ly/hh-sp26

05/22/2026

Cultural differences can shape how people talk about mental health, seek support, and navigate their concerns.

This past weekend at our Latino Education Conference, attendees took a few moments to share powerful reflections on their mental health journeys. By sharing their stories, they are helping raise awareness, encourage open conversations, and reduce the stigma surrounding mental health.

Watch the videos in our Instagram story archive: bit.ly/neha-insta-mh26

05/21/2026

May is Mental Health Awareness Month! This is an important reminder that caring for your mental wellbeing is just as essential as caring for your physical health.

Findings from our 2024 Needs Assessment Survey highlighted that mental health support continues to be a top priority for our community members. We remain committed to reducing stigma, encouraging open conversations, and connecting our community with meaningful support and resources to help improve mental wellbeing.

Read our latest email to hear stories from our community members, join the conversation about mental health and trauma, and learn tips to prioritize your mental health: mailchi.mp/newenglandhemophilia.org/mh26