New York City Hemophilia Chapter (NYCHC)

Join us on Saturday, September 21 from 2 PM to 4 PM for the launch of “Thriving With Time,” a new initiative designed to empower aging adults with bleeding disorders.

This event will bring together a small group of individuals who are interested in shaping the future of care for our community. During the event, we will have a patient panel, a medical presentation from Dr. Christopher Walsh from Mount Sinai, and an interactive workshop where YOU will help us identify key areas of focus and unmet needs in your life. Click below to join us!

"Thriving With Time" Kickoff Event - NYC Hemophilia Chapter Join us on Saturday, September 21 from 2 PM to 4 PM for the launch of “Thriving With Time,” a groundbreaking initiative designed to empower aging adults with bleeding disorders. This event […]

El próximo 12 y 13 de Octubre celebraremos el Mes de la Hispanidad la comunidad latina del Chapter de la Hemofilia de NY (NYCHC) y La Asociación de Hemofilia de NJ (HANJ) con la conferencia 'Unidos por la Sangre' en el Hotel Hilton Newark Airport.

En este evento tenemos contempladas diferentes sesiones educativas para adultos en español y en inglés para niños y adolescentes. Una de las sorpresas que tenemos este año es la sesión donde platicaremos de 'Salud Mental'. También prepárense a disfrutar una fiesta el sábado por la noche después de la cena donde la pasaremos de lo más agusto. El evento incluye una noche de hospedaje en el hotel, comidas durante el evento y transporte en caso de necesitarlo.

Conferencia Latina ‘Unidos por la Sangre’ 2024 - NYC Hemophilia Chapter Invitamos a la Comunidad Latina con un desorden de coagulación a celebrar juntos el mes de la Hispanidad con NYCHC & HANJ. Fecha: Sábado 12 y Domingo 13 de Octubre 2024 […]

Women and teen girls with a bleeding disorder are invited to join us on Saturday, September 21 for an afternoon to relax, learn and get crafty in each other's company.

This event will include lunch, and educational session focusing on women with hemophilia, and a fall crafting activity where we will make a festive fall centerpiece. Space is limited. Learn more and register below!

Educational Lunch & Fall Craft Activity - NYC Hemophilia Chapter Women and teen girls with a bleeding disorder are invited to join us on Saturday, September 21 from 11 AM to 2 PM for an afternoon of lunch, educational session and we […]

Have you ever wondered what happens before medical therapies are approved for use? Before a medication can be prescribed, it goes through a rigorous process to prove that it is both helpful in treating a condition and safe to use. This process is known as clinical trials, a vital step in bringing life-saving medicines to the patients who need them.

On Thursday, August 29 at 8 PM, Octapharma is hosting a live educational webinar, where Dr. Claudio Sandoval will talk about why clinical trials exist, the different phases of clinical trials, and other important considerations for clinical drug development. This live educational webinar will be followed by an interactive Q&A session where you can ask your own questions. Register at: factormyway.com/events/event-understanding-clinical-trials.html

Today is International Relaxation Day! In an effort to help you relax, unwind, and prioritize self-care, we invite you to join us for Self Care Saturday on August 31 at 11 AM! Women, ages 18+, will enjoy for an afternoon of lunch, community connections and self care. This is the perfect opportunity to connect with other women who understand your journey while also learn valuable self-care techniques.

The afternoon will begin with lunch at Harvest Kitchen alongside an interactive discussion about how you can become your own best advocate in life and when it comes to having a bleeding disorder. After the presentation, attendees will get manicures nearby. Register below!

Self Care Saturday - NYC Hemophilia Chapter Join us for Self Care Saturday on Saturday, August 31 from 11 AM to 2 PM! Women, ages 18+, are invited to join us for an afternoon of lunch, community […]

Last weekend, we hosted an afternoon at the ballpark on Staten Island. Attendees from our community enjoyed lunch and an educational presentation together before seeing the Staten Island FerryHawks defeat the Hagerstown Flying Boxcars!

Small events like these help our community come together to connect with others in a fun and relaxed environment. Learn more about our other upcoming events at: www.nyhemophilia.org/events-calendar

Invitamos a la Comunidad Latina con un desorden de coagulación a celebrar juntos el mes de la Hispanidad con NYCHC & Hemophilia Association of New Jersey.

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 por una noche, alimentos incluidos y transporte (en caso de necesitarlo).

Conferencia Latina ‘Unidos por la Sangre’ 2024 - NYC Hemophilia Chapter Invitamos a la Comunidad Latina con un desorden de coagulación a celebrar juntos el mes de la Hispanidad con NYCHC & HANJ. Fecha: Sábado 12 y Domingo 13 de Octubre 2024 […]

This weekend, we hosted an educational lunch alongside a fun crafting activity for Spanish-speaking families in our area.

Small events like these help members of our community get together, enjoy each others' company, and meet other families who are in similar situations.

Just a few sports remain for our afternoon at the ballpark this Sunday! Families of all ages are invited to join us as the Staten Island FerryHawks take on the Hagerstown Flying Boxcars at SIUH Community Park in Staten Island.

Our group will be seated together in a suite. Lunch and tickets will be covered. Space is limited. Secure your spot today by clicking below!

Afternoon at the Ballgame - NYC Hemophilia Chapter We’re taking you out to the ballgame! Join us on Sunday, August 4 at 3 PM for an afternoon of baseball, entertainment and education as we watch the Staten Island FerryHawks take […]

NYCHC está organizando una sesión educativa para la comunidad latina con un desorden de coagulación para este próximo sábado 3 de Agosto a las 11AM. En esta sesión, Novo Nordisk nos presentará un tratamiento para hemofilia A.

Después de la presentación, tendremos una actividad de manualidades para prepararnos para la Navidad. El almuerzo estará incluido.

Navidad en Agosto - NYC Hemophilia Chapter El Chapter de la Hemofilia de NY (NYCHC) está organizando una sesión educativa para la comunidad latina con un desorden de coagulación para este próximo sábado 3 de Agosto a […]

Only a few tickets remain for our afternoon at the ballpark! Families of all ages are invited to join us on Sunday, August 4 as we watch the Staten Island FerryHawks take on the Hagerstown Flying Boxcars at SIUH Community Park in Staten Island.

Our group will be seated together in a suite. Lunch and tickets will be covered. Space is limited. Secure your spot today by clicking below!

Afternoon at the Ballgame - NYC Hemophilia Chapter We’re taking you out to the ballgame! Join us on Sunday, August 4 at 3 PM for an afternoon of baseball, entertainment and education as we watch the Staten Island FerryHawks take […]

Looking for a fun activity for your teenager this summer? Our TORCH Teen Retreat is free to attend and will be held from Friday, August 9 to Sunday, August 11 at the Pocono Environmental Education Center (PEEC), a short 2 hour drive from NYC.

Teens, ages 13-18, from our local bleeding disorders community are invited to join us for a weekend full of hiking, ropes course, team building and leadership training, games, canoeing, campfires & s’mores and more! Meals, lodging and transportation to/from PEEC will be provided for all attendees. Sign up below.

TORCH Teen Retreat - NYC Hemophilia Chapter Our TORCH Teen Retreat will be held from Friday, August 9 to Sunday, August 11 at the Pocono Environmental Education Center (PEEC), a short 2 hour drive from NYC in the […]

We're taking you out to the ballgame! Families of all ages are invited to join us on Sunday, August 4 as we watch the Staten Island FerryHawks take on the Hagerstown Flying Boxcars at SIUH Community Park in Staten Island.

Our group will be seated together in a suite. Lunch and tickets will be covered. Space is limited. Secure your spot today by clicking below!

Afternoon at the Ballgame - NYC Hemophilia Chapter We’re taking you out to the ballgame! Join us on Sunday, August 4 at 3 PM for an afternoon of baseball, entertainment and education as we watch the Staten Island FerryHawks take […]

InhibitCon is a new CHES Foundation, Inc. program. This conference will be from August 2 - August 4 in Houston, TX. InhibitCon has three tracks designed for the inhibitor community: Caregiver, Adult Men, and Tweens/Teens. This weekend program is packed full of education and support. Hotel and travel is provided by CHES.

InhibitCon is open to individuals with an active inhibitor age 12-17 with an adult caregiver and adults ages 18+. It will offer topics critical to the inhibitor community such as treatment products (existing and in development), health insurance changes, mental health support, techniques for continued venous access health, pain management and more. Learn more below!

InhibitCon — Comprehensive Health Education | Rare Bleeding Disorders CHES Foundation, Inc understands at a personal level the obstacles and challenges that coincide with living with an inhibitor as caregivers and adults. We live with inhibitors too. Our goal is to equip you with the tools necessary to thrive with an inhibitor diagnosis despite the many bumps in the r...

Jerry McMillan is a patient with hemophilia B in our community. He recently launched a podcast: Mr. McMillan's Hemophilia Neighborhood.

The goal of this podcast is to help others learn more about bleeding disorders and the life he lives. In this episode, Jerry provides background on his life, and a brief overview of hemophilia. Watch the latest episode by clicking below!

Mr. McMillan Hemophilia Neighborhood: Episode #1 "The Introduction" This first episode is a look into who Mr. McMillan is and why he started a podcast. This episode also talks about hemophilia and some of the ground breaking ...

Families of all ages are invited to join us for an afternoon of baseball on Sunday, August 4 as we watch the Staten Island FerryHawks take on the Hagerstown Flying Boxcars at SIUH Community Park in Staten Island.

Our group will be seated together in a suite. Lunch and tickets will be covered. Space is limited. Secure your spot today by clicking below!

Afternoon at the Ballgame - NYC Hemophilia Chapter We’re taking you out to the ballgame! Join us on Sunday, August 4 at 3 PM for an afternoon of baseball, entertainment and education as we watch the Staten Island FerryHawks take […]

Registration is now open for the Fall 2024 National Outreach Von Willebrand (NOW) Conference. This is hosted by Arizona Bleeding Disorders and will be held from Friday, November 22 to Sunday, November 24 in Phoenix, AZ.

NOW is a national educational conference for individuals and families living with VWD. All of the information provided through the symposium focuses exclusively on the care and treatment of VWD. Travel and hotel accommodations will be provided, but space is limited. Learn more and apply at: https://interland3.donorperfect.net/weblink/weblink.aspx?name=hemophiliaz&id=116

The National Bleeding Disorders Foundation (NBDF) recently hosted a webinar to help our community members gain a deeper understanding of post-traumatic stress disorder (PTSD) and how it can manifest for a person with a bleeding disorder or a family member.

The presenter is Amanda Stahl, MSW, LICSW. Amanda is a Clinical Social Worker at the Boston Hemophilia Center. During the webinar, she explored how PTSD can affect personal and professional relationships and ways patients can seek both medical and non-medical help. Click below to watch the webinar.

PTSD in Chronic Conditions During this session, you will gain a deeper understanding of post-traumatic stress disorder (PTSD) and how it can manifest for a person with a bleeding disor...

Applications to attend this year’s Junior National Championship in Las Vegas will be accepted until next Wednesday, July 3! The competition is from September 20-22 and is open to kids, ages 7-18, who wish to compete in baseball, basketball, golf or swimming.

This is a national sports competition to help children with bleeding disorders build confidence, engage in healthy competition, and connect with others in a similar situation. Learn more and apply by clicking below!

JNC Gettin' in the Game - NYC Hemophilia Chapter Each Fall, CSL Behring hosts the Gettin’ in the Game Junior National Championship (JNC): the first national, and currently the only, sports competition for children with bleeding disorders. At the […]

Yesterday, nearly twenty community members joined us in the heart of NYC's Garment District to learn the basics about sewing.

While sewing can be a useful skill, it also has therapeutic benefits and can help you relax and unwind. After lunch and a short educational presentation, attendees used sewing machines to create their very own unique bags!

Just a few spots remain for this Sunday's Sewing & Self-Care session!

Sign up below to join us for lunch and an interactive sewing class. No experience is required. A sewing machine and all materials will be provided. Learn more and secure your spot below.

Sewing and Self-Care - NYC Hemophilia Chapter On Sunday, June 23 at 11 AM, we’re hosting a sewing session for self-care at the NYCHC Office (entrance located at 205 W. 37th St., New York, NY 10018). Join us to […]

Looking for a fun activity for your teenager this summer? Our TORCH Teen Retreat is free to attend and will be held from Friday, August 9 to Sunday, August 11 at the Pocono Environmental Education Center (PEEC), a short 2 hour drive from NYC.

Teens, ages 13-18, from our local bleeding disorders community are invited to join us for a weekend full of hiking, ropes course, team building and leadership training, games, canoeing, campfires & s’mores and more! Meals, lodging and transportation to/from PEEC will be provided for all attendees. Sign up below!

TORCH Teen Retreat - NYC Hemophilia Chapter Our TORCH Teen Retreat will be held from Friday, August 9 to Sunday, August 11 at the Pocono Environmental Education Center (PEEC), a short 2 hour drive from NYC in the […]

Looking to try a new activity? Join us on Sunday, June 23 at 11 AM for an introductory sewing session!

Together, we will enjoy lunch and an educational presentation before learning basic sewing skills. You will then use your skills and a sewing machine to make a unique bag that they can take home with you after the event! Must be age 16+ to attend. Register below--just a few spots remain!

Sewing and Self-Care - NYC Hemophilia Chapter On Sunday, June 23 at 11 AM, we’re hosting a sewing session for self-care at the NYCHC Office (entrance located at 205 W. 37th St., New York, NY 10018). Join us to […]

Applications to attend this year’s The Junior National Championship in Las Vegas are currently being accepted! The competition is from September 20-22 and is open to kids, ages 7-18, who wish to compete in baseball, basketball, golf or swimming.

This is a national sports competition to help children with bleeding disorders build confidence, engage in healthy competition, and connect with others in a similar situation. Learn more and apply by clicking below!

JNC Gettin' in the Game - NYC Hemophilia Chapter Each Fall, CSL Behring hosts the Gettin’ in the Game Junior National Championship (JNC): the first national, and currently the only, sports competition for children with bleeding disorders. At the […]

Before concluding their legislative session this week, New York lawmakers passed A.901A / S.1267A--a bill to to better regulate step therapy! This was our main legislative ask earlier this year at Albany Days with the New York State Bleeding Disorders Coalition.

Governor Kathy Hochul has until the end of this year to sign the bill into law. Once signed, this would implement reasonable guardrails on step therapy protocols to ensure patients can access the treatments they rely on. Learn more about the bill: nysbd.org/legislative-priorities

On Sunday, June 23 at 11 AM, we’re hosting a sewing session for self-care! Join us to relax, find a new hobby, and discover the therapeutic benefits of creating something with your own hands!

Attendees will enjoy lunch and an educational presentation before learning basic sewing skills. You will then use your skills and a sewing machine to make a unique bag that they can take home with you after the event! Must be age 16+ to attend. Register below!

Sewing and Self-Care - NYC Hemophilia Chapter On Sunday, June 23 at 11 AM, we’re hosting a sewing session for self-care at the NYCHC Office (entrance located at 205 W. 37th St., New York, NY 10018). Join us to […]

On Sunday, because of your incredible support and generosity, we exceeded our goal and raised more than $154,000 during our 19th Annual Unite for Bleeding Disorders Walk!

Thank you to the 36 Team Captains who shared their stories and helped us raise awareness. Thank you to all who donated and joined us for what turned out to be a beautiful summer day at Flushing Meadows. Finally, thank you to the incredible local businesses who help us reach our goal, and to our sponsors for always supporting our local community. We couldn’t have done this without you!

You can help us reach even higher by placing a final donation at: www.nychcwalk.org. Donations will be accepted until 12/31.

Click through to see some of our favorite photos from the day. Explore our entire shared folder at: bit.ly/walk-photos-2024

Today, members of the New York City bleeding disorders community came together for our 19th Annual Unite for Bleeding Disorders Walk! Each year, this special day is filled with hugs and smiles as we come together to raise awareness and funds to support our community.

Because of your incredible support, we have exceeded our goal of raising $150,000! Thank you to the team captains who helped us raise awareness, all those who donated or sponsored the event, and the 35 members of the Factor Club, seen here, who earned special medals for raising more than $500! If you would like to help us reach even higher, you can place a donation at www.nychcwalk.org until December 31. Thank you again for the incredible support!

TODAY is our WALK!

Please arrive for 10 AM.

In your GPS, search for "Universe Court" in Queens. It will bring you right to check in by the Fountain of the Planets. If you need additional help, look for the iconic Unisphere globe!

Our final Walk Team Leaderboard update before the trophies are awarded tomorrow morning!

We are just $12,000 away from reaching our goal. Can you help us make one last push for donations?

Help your team move higher at www.nychcwalk.org.