New England Hemophilia Association

05/01/2026

This past weekend, 15 teens gathered in New Hampshire for our 11th Annual BLeaders Teen Retreat!

With guidance from young adult mentors and role models within the bleeding disorders community, teens took part in fun activities designed to build independence while also managing their condition. The weekend included an open Q&A session with mentors, a round of disc golf, and hands-on opportunities like preparing their own meals. Teens also pitched ideas for future programming and gave back through an environmental service project at Geneva Point Center!

Join us for an upcoming event: www.nehaevents.org.

04/30/2026

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. All proceeds support bleeding disorders community.

Check out some of our favorite photos from last year, below, and be sure to buy your tickets today at www.bestbloody.org.

04/29/2026

Nearly 40 women from across New England came together this weekend for our 13th Annual Women’s Retreat at The Margate on Lake Winnipesaukee in NH!

This year’s theme, Radical Rest, shaped a thoughtfully curated program led by physical therapists from MaineHealth, with sessions crafted specifically for women in our community. The weekend balanced engaging educational presentations with meaningful opportunities to connect, along with hands-on experiences like a flower bar where participants created their own bouquets to take home. Attendees left feeling refreshed, restored, and more connected—equipped with tools and practices to carry home with them. Thank you to our presenting sponsor, CSL Behring, for helping make this impactful weekend possible.

Later this year, in August, we will host our Men’s Retreat! Learn more about this and our other upcoming events at: www.nehaevents.org.

04/28/2026

Last month, we were excited to welcome Rebecca Smith to our Board of Directors.

Rebecca has been an engaged member of the bleeding disorders community since her niece was diagnosed with severe Type 1 von Willebrand disease (VWD), and her sister with mild Type 1 VWD. She regularly participates in educational programs throughout the year and is dedicated to giving back, volunteering her time at events and fundraisers, like our Walk and Golf Tournament.

Professionally, Rebecca is a speech-language pathologist with more than 20 years of experience as an early interventionist. She brings a strong family-centered perspective, along with a deep understanding of how critical it is to connect families with the right services, to her role on the NEHA Board.

04/23/2026

On Wednesday, May 27, we’re hosting an educational dinner with Novo Nordisk at DiMillo's On the Water—a one-of-a-kind floating restaurant in Portland’s Old Port and a local favorite.

Attendees will enjoy a selection of fresh Maine seafood while learning about a new treatment option for hemophilia A or B, with or without inhibitors, for individuals ages 12 and older. Space is limited. Register below!

On Wednesday, May 27, we are hosting an educational dinner at DiMillo’s On The Water in Portland, ME, with Novo Nordisk.

04/22/2026

On Sunday, we came together for an afternoon of exploration and adventure at the Boston Museum of Science!

After lunch, attendees took part in an interactive activity designed to build self-awareness, confidence, and a deeper understanding of living with a bleeding disorder. From there, families and participants of all ages set out to explore the museum's many exhibits and shows.

Want to join us for future events? Visit www.nehaevents.org to learn more and get involved today.

04/21/2026

This week, Dr. Nathan Connell, Associate Director of Boston Bleeding Disorders Center, is sharing his expertise with leaders, experts and doctors in the global bleeding disorders community at the World Federation of Hemophilia Congress in Kuala Lumpur, Malaysia.

His presentations will focus on improving diagnostic accuracy in Von Willebrand Disease (VWD) through multidisciplinary care, and on addressing the unique and often under recognized challenges of bleeding in women across the lifespan.

Thank you, Dr. Connell, for helping the global bleeding disorders community have these critical conversations to ensure that progress is made in treating VWD patients and women with all types of bleeding disorders.

In a few days, Dr. Connell will be joining many more at the World Federation of Hemophilia's - “I’m looking forward to the World Federation of Hemophilia Congress in Kuala Lumpur as an opportunity to engage with our global community advancing care for inherited bleeding disorders. I support the WFH because it reflects a fundamental principle of medicine: that geography should never determine access to diagnosis or life-saving care. My presentations will focus on improving diagnostic accuracy in von Willebrand disease through multidisciplinary care, and on addressing the unique and often underrecognized challenges of bleeding in women across the lifespan. These conversations are critical to ensuring that progress in our field is both clinically meaningful and globally equitable.” --Nathan Connell, MD, MPH (Associate Director, Boston Bleeding Disorders Center)

04/20/2026

Friday, April 17, was World Hemophilia Day!

Our community came together in Boston, MA and Biddeford, ME to celebrate the strength, resilience, and support that continue to reshape what living with a bleeding disorder can look like.

To help us raise awareness and shine a light on the cause for the evening, Boston's iconic Prudential Center was illuminated in red!

Join our Wicked Strong Family at a future event: www.nehaevents.org.

04/20/2026

En Español: Te invitamos a participar en una sesión educativa con Pfizer que se llevará a cabo de forma virtual el jueves 30 de abril a las 7 PM.

La comunidad aprenderá sobre Hympavzi, una nueva opción de tratamiento subcutáneo que se administra una vez a la semana, dirigida a pacientes de 12 años en adelante con hemofilia A o B, sin inhibidores. La presentación será realizada por Meredith Schmidt, representante de Pfizer. Antes de finalizar habrá un espacio para preguntas y respuestas.

Te invitamos a participar en una sesión educativa con Pfizer que se llevará a cabo de forma virtual el jueves 30 de abril a las 7 PM.

04/17/2026

Today is World Hemophilia Day!

This year’s theme, diagnosis, highlights a critical first step in the bleeding disorder journey. Without a diagnosis, access to treatment, education, and support remains out of reach.

We’re committed to helping more individuals get diagnosed and connected to the care they deserve, because early and accurate diagnosis leads to better health and stronger futures for our community.

Wear red today and please share this post to help us raise awareness! Learn more: wfh.org/world-hemophilia-day

04/16/2026

This week, Amanda Stahl, Clinical Social Work at the Boston Bleeding Disorders Center, is attending the World Federation of Hemophilia Congress in Kuala Lumpur, Malaysia, where she will present a session highlighting global disparities in women’s healthcare and advancing efforts for greater inclusion worldwide.

Thank you, Amanda, for your leadership and for your continued work to improve equitable access to care for women, and all patients—both locally and around the globe.

In a couple of days, Amanda Stahl will be joining many more at the World Federation of Hemophilia's - "I’m really looking forward to the WFH Congress in Kuala Lumpur this April. I’m especially excited to connect with colleagues from around the world and learn how others are supporting patients and families living with bleeding disorders. I’m also honored to be presenting on “Women and Being Heard,” focusing on global disparities in women’s healthcare, and to be part of the ongoing push for greater inclusion of women in healthcare worldwide." -- Amanda Stahl, MSW, LICSW

04/16/2026

Gear up for a day on the greens with us on Monday, August 3 at our 36th Annual Golf Tournament!

Join us at Cyprian Keyes Golf Club in Boylston, MA, for a round of golf, lunch, on-course games and activities, a silent auction and more! Secure your spot today by clicking below.

Our 36th Annual Golf Tournament and Raffle will be held in memory of Charles L. Doherty, Jr., at the beautiful Cyprian Keyes Golf Club in Boylston, MA on Monday, August 3.