New England Hemophilia Association

12/26/2025

Bone health is especially important for people with bleeding disorders. To help our community build practical skills and incorporate easy at-home exercises into their daily routines, we offered physical fitness and stretching sessions at our Women’s Retreat, Men’s Retreat, and BLeader Teen Retreat focused on simple fitness techniques that enhance flexibility and mobility.

Our recent newsletter also featured expert guidance from a hematologist on ways to reduce the risk of fractures. Read the article: bit.ly/cp-summer25

12/24/2025

NBDF and WFH issued a joint statement on a severe adverse event with marstacimab rebalancing agent for hemophilia. As more information about this event becomes available, we will update the community.

Read the statement here: https://bit.ly/3YEEN2e

12/22/2025

Last month at FallFest, we presented Holly Seymour with this year’s Champion of Healthcare Award. This award recognizes an individual who has dedicated countless hours to improving the wellness of those living with a bleeding disorder in New England.

Holly is an exceptional nurse at Northern Light in Brewer, ME. She has attended Family Camp and our Annual BLeaders Teen Retreat for the past four years, providing onsite support, bleeding disorders education, and often making meals and cleaning up alongside her daughter, Paige. A community member who nominated her for this award wrote: “As the nurse at my HTC, Holly has believed in me when I haven’t believed in myself, and truly exemplifies care and compassion.” Holly’s dedication and compassion make a lasting impact on everyone she meets, and we are so thankful for how deeply she cares for members of our community.

12/19/2025

Are you dreaming of exploring the great outdoors this winter? Join us for Winter Camp from Friday, February 13 to Sunday, February 15, at Camp Mechuwana in Winthrop, ME!

Families will enjoy an action-packed weekend of engaging, intergenerational outdoor programming that includes ice fishing, snow shoeing and many other outdoor activities! Equipment will be provided, if needed, along with all meals and accommodations. Learn more and register today by clicking below!

Our Annual Winter Camp will be held from Friday, February 13 to Sunday, February 15 at Camp Mechuwana in Winthrop, ME.

12/18/2025

Last year, Joannah and her three sons attended Washington Days for the first time, representing Vermont. In our recent newsletter, she shared her story and explains how they felt as first-time advocates! Read Joannah’s story at: bit.ly/jr-summer25

If you’re interested in attending Washington Days in March, applications will be accepted until Friday, January 2. NEHA will provide hotel and travel for six families from New England. Learn more and apply at: bit.ly/neha-wd26

12/17/2025

This year’s Spirit of Philanthropy Award was presented to Rita and Rick Reutershan, pictured here at Winter Camp earlier this year.

Their generosity and ongoing support have made a profound difference for families in our community. With their son Michael serving on our Board of Directors, Rita and Rick have long been committed to NEHA’s mission—funding the full cost for numerous families to attend both Family Camp and Winter Camp each year. They embody the true spirit of giving, and we are deeply grateful for their continued kindness and support.

12/16/2025

The UConn Huskies Honorary Kid Captain program partners with Connecticut Children's to highlight courageous patients facing serious medical challenges. For one unforgettable evening, each child is welcomed as an honored guest at a UConn game, surrounded by cheers, encouragement, and support as they watch the game up-close and personal and even get to meet star players on the team.

Last month, Anay, who lives with hemophilia, had his moment on the court as the Honorary Kid Captain during a men’s basketball game. Congratulations, Anay. And thank you to Connecticut Children's and the UConn Huskies Athletics Program for creating experiences that remind kids like Anay, and so many in our community, just how special they are.

12/15/2025

Looking for stretches and exercises to do indoors during the cold weather? We've got you covered! We partnered with Jeff LeBlanc, a physical therapist with hemophilia from Massachusetts, to help you stretch and maintain healthy joints.

The three videos focus on the most common joint issue for those with a bleeding disorder: ankle, knee and elbow. Visit www.nehafitness.org to explore our interactive video series!

We teamed up with Jeff LeBlanc, PT, DPT, CSCS, a physical therapist with severe hemophilia A from Massachusetts, to create a series of videos to help people with bleeding disorders manage joint issues they may experience.

12/13/2025

This week, we hosted a webinar with Matt Delaney, Government Relations Manager at the National Bleeding Disorders Foundation (NBDF).

As open enrollment continues, Matt provided a timely update on recent changes to health insurance and what they could mean for you and your family. With major policy decisions unfolding almost daily in Washington, including the potential expiration of key insurance subsidies, staying informed has never been more important. Matt also took time to share updates regarding state-specific policy developments that will shape healthcare across New England in the months ahead. Watch a recording of the presentation below.

In December, during the height of open enrollment, we hosted a virtual educational session to help our community understand recent changes to health insuranc...

12/12/2025

In our latest newsletter, Helen shared how quickly their lives changed when their son was diagnosed with hemophilia at nine months old.

While shocked and confused at the unexpected diagnosis, their care team at their HTC stepped in to support them and guide them through this new journey. Read their story: bit.ly/hs-summer25

12/11/2025

During FallFest in November, we were proud to present this year’s New Family Engagement Award to the Durkin Family—honoring a new family whose involvement has already made a lasting impact.

From day one, they’ve embraced our community, especially through their incredible fundraising efforts. In just a few years, they’ve raised nearly $16,000 to support our mission. They’ve also become active participants in events like Family Camp and continue to set an inspiring example for other new families joining NEHA. Congratulations, Durkin Family!

12/10/2025

The National Bleeding Disorders Foundation (NBDF) is once again inviting members of the bleeding disorders community to lead sessions at their 78th Annual Bleeding Disorders Conference (BDC) in Orlando, Florida this summer.

Applications will close on Monday, January 12. If you have an interesting topic you would like to present on and share with others in our community, learn more and submit your application today: bit.ly/4iDtRvd