New York City Hemophilia Chapter (NYCHC)

08/24/2026

We’re excited to welcome Rob Harrison to our Board of Directors!

Rob is a partner at a New York CPA firm, where he leads the international practice serving both public and private entities. Earlier in his career, he was a partner at one of the Big Four accounting firms, a role he also returned to later in his career.

Rob has Hemophilia A and grew up on the west coast of Canada. Outside of work, he enjoys traveling and spending time outdoors with his family. He’s also passionate about vintage motorcycles, which he restores and rides. Welcome, Rob!

08/20/2026

We've got a SUITE deal for you! Register for our Back To School Bash before August 31 and you’ll be entered for a chance to win tickets to our suite at Yankee Stadium for the game on Sunday, September 27.

In addition to the chance to catch the Yankees, the event will feature practical sessions for adults and fun activities for kids and teens. Join us for a day of learning, connection, and getting ready for the school year. Register today: www.nyhemophilia.org/school26

08/19/2026

Back to school time is here! We’ve put together a Back to School Toolkit with resources to help you prepare for the new school year and make sure teachers and school staff understand your child’s bleeding disorder.

From customizable resources for educators to information about IEPs and 504 plans, field trips, extracurricular activities, and transitioning to a new school, there’s something for students at every stage. Explore our Back to School Toolkit and start the school year prepared: https://mailchi.mp/newenglandhemophilia.org/bts26

08/18/2026

En Español: Invitamos a la Comunidad Latina con un desorden de coagulación a celebrar juntos el mes de la Hispanidad con NYCHC. Sábado 3 y Domingo 4 de Octubre a Hotel DoubleTree by Hilton (Fort Lee, NJ).

Tendremos un evento lleno de muchas actividades para niños, adolescentes y adultos donde aprenderemos y nos divertiremos juntos. Las sesiones de adultos serán en español y las de los niños y adolescentes en inglés (pero contamos con asistencia en español). Contaremos con habitaciones en el hotel para que descansen la noche del sábado, alimentos incluidos y transporte (en caso de necesitarlo). Este evento es gratuito.

Invitamos a la Comunidad Latina con un desorden de coagulación a celebrar juntos el mes de la Hispanidad con NYCHC. Fecha: Sábado 3 y Domingo 4 de Octubre 2026 Lugar: Hotel DoubleTree […]

08/17/2026

Join us on Wednesday, September 16 at 6:30 PM for an educational dinner at Trattoria Dell’Arte in Manhattan!

Attendees will learn about a product approved to treat both hemophilia A and hemophilia B without inhibitors. Learn more and sign up below.

Educational Dinner: Treatment Option for Hemophilia A or B By Brandon Greene  Posted August 12, 2026  In News, NYCHC Events, Upcoming events Educational Dinner: Treatment Option for Hemophilia A or B2026-08-122026-08-16http://www.nyhemophilia.org/wp-content/uploads/2016/07/NYCHC_logo3-trans-hdr-co...

08/14/2026

Join us for our Back to School Bash on Sunday, September 20, at The Paley Center in Manhattan! Adults will gain practical tools for navigating school, including 504 Plans and IEPs, supporting safe participation in sports and gym class, and helping children build self-advocacy skills.

Kids and teens will enjoy baseball and golf simulators, Mario Kart and Fortnite tournaments, and a podcast-making workshop. Lunch will be provided, so bring the whole family and get ready for the school year together! Learn more and register below.

Back To School Bash By Brandon Greene  Posted August 10, 2026  In Advocacy, News, NYCHC Events, Upcoming events Back To School Bash2026-08-102026-08-12http://www.nyhemophilia.org/wp-content/uploads/2016/07/NYCHC_logo3-trans-hdr-copy.pngNYC Hemophilia Chapterhttps://www.nyhemophilia.org/wp-content/...

08/12/2026

This weekend, we hosted our TORCH Teen Retreat in the Poconos!

From kayaking and tackling the ropes course to gathering around the campfire for s’mores, the weekend was packed with adventure, fun, and new experiences for all attendees. The teens also had the chance to build valuable life skills, from preparing their own meal during a cooking exercise to getting creative with pancake art.

Most importantly, the weekend was about connection. The teens had the opportunity to spend time together, support one another, try new things, and strengthen the friendships and community that make this event so special each and every year.

08/06/2026

This weekend, we hosted our first Women’s Retreat presented entirely in Spanish! Patients with bleeding disorders, parents, and caregivers came together for a weekend of education, connection, and community, all in their native language.

The retreat kicked off with an interactive discussion led by Lynda Martinez, RN, from the Hemophilia Treatment Center at Northwell Health where participants learned how to navigate the process of receiving a bleeding disorder diagnosis at an HTC, communicate effectively with their hematologist, and prepare for appointments. Throughout the weekend, attendees took part in sessions on self-advocacy, parenting children with bleeding disorders, and self-care, while also connecting with one another during a picture frame-making workshop, a scenic walk overlooking the river and other fun social activities.

Thank you to everyone who joined us and helped make this event such a meaningful and memorable experience, and thank you to our sponsors: Novo Nordisk, CVS Specialty, Ethical Factor, InfuCareRX, and Pfizer for helping to make this possible.

08/04/2026

Ferring Pharmaceuticals recently announced that STIMATE (desmopressin acetate) nasal spray is expected to return to the market in the United States starting in October.

The expected return comes after FDA approval was granted following the resolution of the packaging issues that led to its voluntary recall in 2020. Learn more below, from the National Bleeding Disorders Foundation (NBDF): https://bit.ly/4x2baas

https://www.facebook.com/share/p/19KweGFSuc/

STIMATE® is expected to return to the U.S. market in October 2026.
Ferring Pharmaceuticals has announced that STIMATE® (desmopressin acetate) nasal spray is expected to become available following FDA approval after resolving the packaging issues that led to its voluntary recall in 2020.

NBDF is working to learn more about product availability, distribution, and formulary inclusion and will continue to share updates as they become available.

🔗 Read more: https://bit.ly/4x2baas

08/03/2026

Applications are now open for the Save One Life, Inc. NEXT Leaders Congress, taking place this October in Phoenix, Arizona!

Young adults ages 20–30 with a bleeding disorder are invited to apply for this two-day leadership development program. Participants will build leadership, self-advocacy, and peer advocacy skills while exploring local and global issues affecting the bleeding disorders community. Attendees will also have the opportunity to connect with community leaders, healthcare professionals, and experts from around the world. Airfare, hotel accommodations, and meals will be provided. Learn more and apply: https://saveonelife.net/next-leaders-congress