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World Hemophilia Day
We were proud to co-host an event with Sanofi Genzyme to recognize World Hemophilia Day in 2019! The event took place on Wednesday, April 17th at 6PM at the UMass Club, and included a free dinner and activities for the entire family. Here, each family could to take part in hands-on activities that included team challenges related to this year's theme, Project Gratitude. This location has some of the best views in the city! The Zakim Bridge and South Station…
Hispanic Heritage Month Event
Each year, NEHA is proud to offer programming specific to our Hispanic community. The conference is filled with educational opportunities for community members to learn and connect with others. All educational sessions are presented in Spanish only. Si usted está interesado en aprender más de NEHA y habla español, por favor póngase en contacto con NEHA, [email protected] Learn more about this event in 2020 by clicking here.
Each Fall, the New England Hemophilia Association (NEHA) hosts our annual meeting, called FallFest. This is a two-day event that provides educational programming for adults, teenagers (13-18 years old), youth (6–12 years old), and children (newborns–5 years old). In 2019, over 300 community members and industry partners attend FallFest in Warwick, RI at the Crowne Plaza Hotel from Saturday October 26 to Sunday, October 27! Our Keynote speaker was Heather Abbott, a survivor of the Boston Marathon bombing. She gave an inspirational…
von Willebrands Retreat
This retreat is focused solely on families living von Willebrand's Disease (VWD). Developed with community feedback, this retreat is led by professional facilitators and Hemophilia Treatment Center (HTC) partners. The retreat is intended to provide community members living with vWD a chance to learn, network, and ask questions in a more focused setting. Siblings are welcome to attend. Learn more about this event in 2020 by clicking here.
Educational Advocacy Dinner
On Wednesday, November 13, NEHA and Takeda hosted a free Educational Dinner entitled "Self-Advocacy: Sharing Your Story." This took place at the Common Man Restaurant in Concord, NH. This discussion focused on understanding and practicing self-advocacy. This talk also focused on the critical elements of telling a compelling story.
Family Educational Cooking Class
Maintaining a proper diet is key to managing your bleeding disorder. The New England Hemophilia Association partnered with CSL Behring to host an educational cooking class on Wednesday, November 20 at Taste Buds Kitchen in North Andover! Dr. Diane Dimon, CSL Behring Common Factors Advocate and founder and director of Matters of the Mind, taught us about mindful eating while we whip up some culinary masterpieces.
Educational Dinner: Cognitive Conversations
The New England Hemophilia Association was happy to partner with Sanofi Genzyme to host this educational dinner on Thursday, December 12 at Waterman Grille in Providence, RI! This ground-breaking program explained how different parts of our brain work and why we make the choices we do. This presentation also explored insights from the field of behavioral science and how they can be applied in conversations and behaviors related to managing Hemophilia. This interactive program was presented by facilitators Gretchen Hover and…
Virtual World Hemophilia Day Pizza Party
The Hemophilia Alliance of Maine (HAM) and the New England Hemophilia Association (NEHA) hosted a Virtual Pizza Party to celebrate the 30th Annual World Hemophilia Day on Friday, April 17, 2020. Thanks to the sponsors of this event, NEHA and HAM were able to cover the cost of your favorite pizza of up to $10 a person. To be refunded for your pizza purchase, send a photo of your receipt to [email protected] In addition, we will send along a package with…
Consumer Medical Symposium
This event was originally scheduled for Saturday, March 28, but has been moved to a virtual event. This event helps consumers understand what current and potential medical advancements (including gene therapy) may mean for you and your family. Information will be presented about hemophilia A, hemophilia B, vWD, and other rare bleeding disorders. Information will also be shared about current insurance barriers and trends, as well as a forum about the psychosocial and emotional implications of change. Agenda Overview…
Medical Symposium Interactive Live Sessions
This was the fourth event during our Virtual Consumer Medical Symposium. To learn more about this virtual series of events, please click here. About This Session This live session was held on Saturday, July 25 from 9 AM to 11:30 AM and included educational sessions to help you understand more about health insurance, and the psychosocial impact of processing changes. Following these sessions, participants attended two industry breakout sessions where they enjoyed presentations about the each company' products, therapies,…