NYC Hemophilia Chapter

Community Conversations: Research Inspiration
2024-02-28 19:00 - 20:30 (America/New_York)
Join us on Wednesday, February 28 at 7 PM for a webinar that will transform the way you think about research and the impact it can have on your life as someone with a bleeding disorder.
Dr. Jill Johnsen, a renowned physician scientist from the Washington Center for Bleeding Disorders, will take us through an interactive dive deep into the latest bleeding disorder research updates. You will gain insights into the National Bleeding Disorders Foundation’s (NBDF) National Research Blueprint (NRB) and discover how cutting-edge technologies such as next-generation DNA sequencing and multi-omics are revolutionizing our understanding of blood disorders.
But that’s not all; you will also have the opportunity to share your thoughts and help shape the future of research. Join us to be inspired, and let your voice be heard so we can all make a difference in shaping the future of bleeding disorder care and treatment, together!
Register Here

Almuerzo con 2 sesiones educativas en Español
2024-02-10 11:45 - 14:45 | Rosa Mexicano, 9 East 18th St, New York, NY, 10003, United States
Invitamos a los adultos de nuestra comunidad latina con un desorden de coagulación a disfrutar de 2 sesiones educativas con un almuerzo el sábado 10 de Febrero en el restaurante ‘Rosa Mexicano – salon Sky Room East’ (9 East 18th St, NY NY) de las 11:45 am a las 2:45pm.
Los temas de las sesiones serán: Personalizando su plan de tratamiento y Derechos de los Inmigrantes. Este evento es patrocinado por Bayer y presentado por Margarita Llibre Rogers.
Para cualquier duda, comunícate con Nelly Miranda por teléfono al número (551) 243-3066 o envía un email a: nelly.miranda@nyhemophilia.org.
Regístrate antes del 7 de febrero.
Registrate aquí

Almuerzo y Sesión educativa en Español
2024-01-20 11:00 - 13:30 | HARVEST KITCHEN, 269 Columbus Ave, New York, NY, New York, NY, 10023, United States
Almuerzo con actividad manual para el dia de San Valentín
Invitamos a las mamás latinas con un desorden de coagulación a disfrutar de un almuerzo y preparar una Corona para el día de San Valentín el sábado 20 de Enero en el restaurante “Harvest Kitchen’ (269 Columbus Ave, NY NY) de las 11:15 am a las 12:30pm.
Este evento es patrocinado por Infucare y presentado por Anne Boyea, Coordinadora de Atención a Pacientes de ‘InfuCare Rx Specialty Pharmacy’

Detalles del registro:

– El espacio es limitado.
– Se proporcionará un almuerzo y un kit para preparar la actividad manual a las asistentes sin cargo alguno.
– Este evento es para mamás con un desorden de coagulación que vivan dentro del área tri estatal.

Para registrarte comunícate con Nelly Miranda por teléfono al número (551) 243-3066 o envía un email a: nelly.miranda@nyhemophilia.org

Sesión educativa en Español
El sábado 20 de Enero tenemos preparado una sesión educativa en español para las mamás de nuestra comunidad latina con un desorden de coagulación en el restaurante ‘Harvest Kitchen’, que se encuentra ubicado en 269 Columbus Ave, NY NY. Este será llevado a cabo de las 12:30pm a la 1:30pm.

El tema de la sesión será ‘Vivir con un trastorno de sangrado, conviértase en su mejor defensor’.
Esta sesión es patrocinada por Novo Nordisk y presentada por Martha Boria.

Detalles del registro:
– El espacio es limitado.
– Este evento es para mamás con un desorden de coagulación que vivan dentro del área tri estatal.

Para registrarte comunícate con Nelly Miranda por teléfono al número (551) 243-3066 o envía un correo electrónico a: nelly.miranda@nyhemophilia.org

Teen Pizza Party
2024-01-13 11:00 - 13:00 | NYCHC Office, 500 7th Avenue, 8th Floor, New York, NY, 10018, United States
Teens in our community are launching a group to empower other 13-19 year olds to gain independence, improve their collaboration, and cultivate their leadership skills by embracing the bleeding disorders community in our area.

This Saturday, January 13 at 11 AM, teens are invited to join us for a pizza party at the NYCHC Office (205 W. 37th St.) to officially launch this group and plan teen events for the upcoming year. Join us to meet new friends while making a difference in your community! Unaffected teen siblings are also encouraged to attend.

Sign Up Here

Gala
2023-12-12 18:00 - 23:00 | The Stand Restaurant & Comedy Club, 116 E 16th Street, New York, NY, 10003, United States
Join us for a bloody funny night at the New York City Hemophilia Chapter’s Gala! Help us celebrate on Tuesday, December 12 for at The Stand Restaurant & Comedy Club near Union Square in New York, NY!
This special evening will help us honor three incredible members of our local bleeding disorders community: Kim Spalter, Mily Cepeda, and Joseph Stanco. The night will include cocktails, dinner, entertainment, award presentation, raffles, auction and much more while raising funds and awareness for our mission in supporting the bleeding disorder community.
Learn More Here

Education Day
2023-11-19 10:00 - 16:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Join us on Sunday, November 19, from 10 AM to 4 PM for Education Day at the NYCHC Office. The entrance is located at 205 W. 37th St., New York, NY 10018.
This annual event is our largest educational conference of the year and is intended to bring the entire Greater NYC bleeding disorder community together in one setting to connect, learn, and support one another. This year’s agenda will help you build deep relationships while learning from quality and meaningful educational sessions about bleeding disorder management and other relevant topics.
Agenda Overview

Please arrive promptly at 10 AM for check-in. Join us on the 8th Floor.
Lunch will be provided.
A full agenda will be shared with registered attendees.

Registration

The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here

Women's Retreat
2023-11-03 16:00 - 2023-11-04 15:00 | Hotel Nyack, 400 High Avenue, Nyack, NY, 10960, United States
We are partnering with the Hemophilia Association of New Jersey (HANJ) to host our 2nd Annual Females and Bleeding (FAB) Women’s Retreat! Join us for an overnight stay at the Hotel Nyack in Nyack, NY from Friday, November 3 to Saturday, November 4.
The retreat will feature educational sessions, social activities, health and wellness workshops, breakout sessions, and much more! The focus will be education, personal growth, and networking.
Agenda Overview

Start: Friday at 4 PM.
End: Saturday at 3 PM.
Agenda: Will be shared with registered attendees one week before the event begins.
Hotel: Hotel rooms will be provided for Friday evening at no cost to attendees.
Meals: All meals during the retreat are included.

Registration

This retreat is free to attend.
Space is limited to only 30 women who meet all three of the following qualifications:

Live within the Hemophilia Association of New Jersey or the New York City Hemophilia Chapter geographic coverage areas.
Are at least age 18 or older.
Are affected by a bleeding disorder in at least one of the following ways:

is diagnosed with a bleeding disorder, or,
is a carrier of a bleeding disorder, or,
is the spouse of someone with a bleeding disorder, or,
is a parent or legal guardian of someone with a bleeding disorder.

Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Thank you to Octapharma for supporting this event.
Register Here

Mes de la Hispanidad 2023
2023-10-14 11:00 - 2023-10-15 13:30 | Hilton Newark Airport, 1170 Spring St, Elizabeth, NJ, 07201, United States
Familias Latinas con un desorden de coagulación. Celebremos juntos el mes de la Hispanidad con NYCHC & HANJ

Sábado 14 y domingo 15 de Octubre 2023

Hotel: Hilton Newark Airport (1170 Spring St, Elizabeth, NJ 07201)

Tendremos un evento lleno de muchas actividades para niños, adolescentes y adultos donde conoceremos otras familias. 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. Este evento es gratuito y esperamos verlos ahí!
Regístrese aquí
Para más información envía un correo electrónico a Nelly Miranda (nelly.miranda@nyhemophilia.org) por si necesitas ayuda para registrarte.

Ballgame in the Bronx
2023-09-08 18:30 - 22:00 | Yankee Stadium, 1 E 161 Street, Bronx, NY, 10451, United States
We’re taking you out to the ballgame! Families from the New York City area are invited to join us on Friday, September 8 for an evening at the ballpark as the New York Yankees take on the Milwaukee Brewers at Yankee Stadium in the Bronx.
Agenda Overview

5:35 PM – Gates open at Yankee Stadium.

For expedited entry, enter at the Suite / VIP entrance (near Gate 4). You can enter at any entrance if you choose. Learn more about gate locations here.
Once you enter and pass through security, please make your way to our suite for check-in. (More details will be shared before the game begins)
Please be in our Suite by 6:35 PM.

6:30 PM – Food is served. Join us for delicious, all inclusive food before the game starts alongside a short educational presentation.
7:05 PM – Game begins. All attendees will be seated together in a suite.

Event Information

Tickets: Each registered attendee will receive one free ticket to enter Yankee Stadium and watch the ballgame. Tickets will be transferred to you electronically before the game begins.
Location: All NYCHC attendees will be seated together in a suite exclusively for our party. There is indoor and outdoor seating and private restrooms for our use.
Food: Attendees in our group will receive all-inclusive ballpark fare (hot dogs, chicken tenders, pizza, popcorn, chips, cookies, brownies, soda, water and more).
Weather: The event will happen rain or shine, unless the New York Yankees cancel the game due to inclement weather.
Transit: All attendees are encouraged to use public transit to attend this event and avoid congestion in the area.

Registration

Space is limited to the first 40 people to register.
Please register before Wednesday, August 30.
The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Thank you to Octapharma and InfuCare Rx for supporting this event.
Register Here

NHF Bleeding Disorders Conference
2023-08-17 - 2023-08-19
The National Hemophilia Foundation (NHF) is hosting the 75th Annual Bleeding Disorders Conference (BDC) in-person this summer from August 17-19 in National Harbor, Maryland (outside of Washington, DC).
Please click here to learn more about their travel grant offering’s this year including. Should you have any questions feel free to email bdctravelgrants@hemophilia.org and a member of our travel grant team would be happy to assist you.
Learn more at: hemophilia.org/bdc.
Register for BDC Here

TORCH Teen Retreat
2023-08-11 - 2023-08-13 | PEEC, 538 Emery Rd, Dingmans Ferry, PA, 18328, United States
Our TORCH Teen Retreat will be held from Friday, August 11 to Sunday, August 13 at the Pocono Environmental Education Center (PEEC), a short 2 hour drive from NYC in the Delaware Water Gap region.
TORCH (Teen Opportunities and Resources for Community Health) is NYCHC’s teen program for teens ages 13-18 within the Greater NYC bleeding disorders community. The goal of this retreat is to foster independence, self-advocacy, support, and accountability among teens, while also building future leaders in the bleeding disorders community.
Retreat Details

Activities: Hiking, ropes course, orienteering, team building and leadership training, games, canoeing, campfires & s’mores and more!
Meals: All meals, snacks and beverages will be provided from dinner on Friday evening to lunch on Sunday.
Sleeping Arrangements: Teens will share cabins based on their gender.
Packing List: A full packing list will be shared with registered attendees before the event begins.
Supervision: Adults present include NYCHC staff, a nurse, young adult mentors, and chaperones in addition to PEEC’s onsite staff.

Transportation
We’ll be providing free round-trip transportation to and from PEEC.

Bus will depart NYC on Friday, August 11 at 3 PM.
Arrive at 2:30 PM.
Location: Secaucus Junction, North Rd, Secaucus, NJ 07094.
On Sunday, the bus will drop teens off at the same location, between 7:00 PM and 7:30 PM (depending on traffic).

Registration

This program is free , however, spaces are limited.
This event is open only to teenagers with bleeding disorders (ages 13 -18) and their siblings living in their immediate household from the New York City tri state area.
Registration will end on Friday, July 28.

Register Here

JNC Gettin' in the Game Application Deadline
2023-08-09
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 games, participants will have the opportunity to learn the fundamentals of their respective sport, participate in friendly competition, and have a chance to connect with fellow members of the bleeding disorders community from across the country.

About the JNC

The Junior National Championship is held from October 6 to October 8 in Henderson, Nevada–right outside of Las Vegas.
CSL Behring will cover the cost of transportation and lodging for the participant and one parent or guardian.
The JNC is open to kids ages 7 to 18.
Attendees can compete in their choice of four sports: baseball, basketball, golf or swimming.

Application Process

To attend, you must be selected by your local bleeding disorder chapter. NYCHC can select one child to participate in this program this year.
The child applying will need to answer one of the following questions, in 250 words or less:

What lessons have you learned through your experience of having a bleeding disorder
Describe a recent challenge in your life and how you worked to overcome it.

Applications will be accepted until Wednesday, August 9.

Apply Here

Aprendamos juntos, disfrutemos lunch y bailemos salsa
2023-08-05 11:30 - 14:00 | NYCHC Office, 500 7th Avenue, 8th Floor, New York, NY, 10018, United States
El Chapter de la Hemofilia de NY (NYCHC) invita a las familias latinas a participar en un evento el Sábado 5 de Agosto a las 11:30am en la oficina de NYCHC ubicada en 500 7th Ave, NY, NY donde BioPlus nos hablará de los servicios que ofrece a la comunidad. Será una sesión informativa y divertida donde se ofrecerá almuerzo y aprenderemos a bailar salsa al final del evento.
Confirma tu participación antes del 1o de Agosto enviando un mensaje de texto a Nelly Miranda al 551-243-3066 o a su dirección de correo electrónico: nelly.miranda@nyhemophilia.org.

Ballgame In The Bronx
2023-07-23 13:35 - 17:00 | Yankee Stadium, 1 E 161 Street, Bronx, NY, 10451, United States
We’re taking you out to the ballgame! Blood Brothers from the New York City area are invited to join us on Sunday, July 23 for an afternoon at the ballpark as the New York Yankees take on the Kansas City Royals at Yankee Stadium in the Bronx.
Who Is Invited To Attend?

You must be either a Blood Brother (person who identifies as male with any type of a bleeding disorder), or a Caregivers/parents (dads or grandfathers) of a child with a bleeding disorder.
All attendees must be age 16+ to attend.

Agenda Overview

12:05 PM Gates Open at Yankee Stadium.

For expedited entry, enter at the Suite / VIP entrance (near Gate 4). You can enter at any entrance if you choose. Learn more about gate locations here.
Once you enter and pass through security, please make your way to our suite for check-in. (More details will be shared before the game begins)
We recommend arriving as early as possible so you can find your seat and enjoy the benefits of your ticket.

1:35 PM – Game Begins. All attendees will be seated together in a suite.

Event Information

Tickets: Each registered attendee will receive one free ticket to enter Yankee Stadium and watch the ballgame. Tickets are valid for Sunday, July 23 only. Tickets will be transferred to you electronically before the game begins.
Location: All NYCHC attendees will be seated together in a suite exclusively for our party. There is indoor and outdoor seating and private restrooms for our use.
Food: Attendees in our group will receive all-inclusive ballpark fare (hot dogs, chicken tenders, popcorn, chips, cookies, brownies and more).
Weather: The event will happen rain or shine, unless the New York Yankees cancel the game due to inclement weather.
Transit: All attendees are encouraged to use public transit to attend this event and avoid congestion in the area.

Subway: The B, D & 4 trains stop at 161 St-Yankee Stadium
Metro-North: Hudson Line to Yankees-E 153rd Street Station
MTA Bus: Stops near Yankee Stadium: Bx1, Bx2, Bx6, Bx13, and BxM4.

Registration

Space is limited to the first 40 people to register.
Please register before Wednesday, July 19.
The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Thank you to Octapharma for supporting this event.

Register Here

Tee Up For A Cure: Golf Tournament & Dinner Reception
2023-07-17 | Westchester Hills Golf Club, 401 Ridgeway, White Plains, NY, 10605, United States
Join us on Monday, July 17 for our 3rd Annual Tee Up For A Cure: Golf Tournament & Dinner Reception. Both events will be held at the Westchester Hills Golf Club in White Plains, New York.
The event will provide a full day on the greens followed by an inspiring evening including dinner, an auction, live entertainment and much more while raising funds and awareness for the New York City Hemophilia Chapter.
Learn More and Register Here

Unite for Bleeding Disorders Walk 2023
2023-06-18 10:00 - 13:00 | Flushing Meadows Corona Park, Queens, NY, 11354, United States
The New York City Hemophilia Chapter (NYCHC) hosts an annual Unite for Bleeding Disorders Walk to bring together our community and supporters while raising vital funds. All individual donations raised through this fundraiser go directly to our services and programs. Your dedication and support allows us to assist, advocate, and serve those with a bleeding disorders in the New York City area.
Join us this year for our 18th Annual Unite Walk on Sunday, June 18 at Flushing Meadows Corona Park in Queens! We are reaching higher than ever before with a goal of raising $250,000. Please consider forming a team or joining an already existing team. Any amount you raise makes a difference.
Learn More Here

Fitness Challenge
2023-05-24
Being physically active is one key to managing a bleeding disorder. It also has many other benefits, like relieving stress, strengthening connections within the community, and improving general quality of life. Physical activity has been crucial during the pandemic: whether that was by going for socially distant walks, hiking locally, or using household objects as weights!
To help encourage physical activity within our community, the New England Hemophilia Association (NEHA) and the New York City Hemophilia Chapter (NYCHC) are hosting a new version of our Annual Fitness Challenge.

About The Fitness Challenge

Based on your feedback, the Fitness Challenge will now be held from Wednesday, May 24 to Wednesday, July 26. We hope the warm weather makes it easier for you to get outside longer and more often.
Each accepted participant will receive a sleek Max Buzz Activity Tracker to help record your activity. You’ll also be able to keep this after the challenge ends to help you track your activity on your own.

This will be free to you and is provided by NYCHC and NEHA.

Who Can Participate?

All community members (age 16+) are invited to participate.

This includes bleeding disorder patients, unaffected siblings, parents and other family members.

All physical activity levels are encouraged to get involved: whether you are looking for motivation to get off the couch, inspiration to increase your current work out level, or competition to set a new personal record.
This challenge is a fun way to become a healthier, happier you! While your activity level is counted in steps per day, the creative platform allows you to track many different activities, like running, walking, biking, lifting weights, swimming, or even cleaning the house.

Application Process and Key Dates

Participation is free for people living in New England or the New York City area.
Applications will be accepted until Friday, May 5.

Please note: completing this application does not guarantee acceptance into the Fitness Challenge.

Accepted participants will be notified of their acceptance on Tuesday, May 9.
The Fitness Challenge will be held from Wednesday, May 24 to Wednesday, July 26.

Apply Here

If you have any questions, please email Brandon Greene, NEHA and NYCHC’s Marketing and Communications Manager, at bgreene@nehemophilia.org.

Infusion Training & Lunch
2023-05-07 11:30 - 14:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Join us on Sunday, May 7, from 11:30 AM to 2 PM for our Infusion Training and Lunch.
This will be held at the NYCHC Office. The entrance is located at 205 W. 37th St., New York, NY 10018. When you arrive, please join us on the 8th Floor. Lunch will also be provided.
This small gathering will feature hands-on instructions for self-infusion techniques of peripheral IV, port access, and subcutaneous injections.

Self-infusion will be covered, in addition to infusing someone else (i.e. a child).
All ages and skill levels are invited to join us, whether you would like to learn more about the infusion process, or you wish to perfect your skills.
Patients are welcome to bring their medication and supplies if they would like to treat at the program.

Registration

The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here

A Day at the Zoo with NYCHC
2023-04-30 11:30 - 16:00 | Bronx Zoo, 2300 Southern Boulevard, Bronx, New York, 10460
Bring your crew to the Zoo for a roaring good time! Join us for a fun day at the Bronx Zoo on Sunday, April 30, beginning at 11:30 AM. This event will allow families to come together to meet one another and connect in a relaxed and laid-back environment.
Agenda Overview:

11:30 AM: Arrival & Check-In | Lot C Entrance (2300 Southern Boulevard)

Please go immediately to the Dancing Crane Pavilion once you check in.

11:30 AM: Community Meet & Mingle | Dancing Crane Pavilion
12 PM: NYCHC Welcome Session and Presentation | Dancing Crane Pavilion

Wristbands for lunch will be passed out at the end of the Welcome Session.
You must be present at 12 PM to receive a wristband for lunch.

Lunch | Please eat inside the Dancing Crane Pavilion
Your ticket allows you to explore the Zoo on your own for the remainder of the day. You can leave at any time. The Zoo closes at 5 PM.
The event will happen rain or shine (rain ponchos will be available if needed).

Registration Information

Space is limited.
Registration will end on Wednesday, April 26.
Each registered attendee will receive free admission to the Zoo and a lunch bracelet at no cost.
This event is open only to people with bleeding disorders and family members living in their immediate household from the New York City tri state area.

Register Here

Teen Bowling Event
2023-04-29 11:00 - 15:00 | Bowlero – Mineola, 199 E Jericho Turnpike, Mineola, NY, 11501, United States
Join us on Saturday, April 29, from 11 AM to 3 PM for a fun-filled day of bowling, lunch and an educational presentation on Long Island.
Don’t miss this fantastic opportunity to have a great time and make new friends with other teenagers and families in the bleeding disorders community.
Part 1: Teenagers Only (ages 13-19) – Bowling from 11 AM to 1 PM

Bowlero – Mineola (199 E Jericho Turnpike, Mineola, NY 11501).
Free bowling and shoe rental for all participants.

Part 2: Teenagers and Their Families – Lunch and Educational Presentation from 1 PM to 3 PM

Osteria Morini Long Island (630 Old Country Rd, Garden City, NY 11530).
This is a short two-mile drive from bowling. Families are welcome to drive from themselves between the two locations, or we can provide you with an Uber from bowling to lunch. Transportation will be arranged at the bowling alley.
Free lunch will be provided to all attendees.
This will feature a talk about Altuviiio from Dr. Jainbain.

Registration

The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

This event is sponsored by Sanofi.
Register Here

World Hemophilia Day Dinner
2023-04-24 18:30 - 20:30 | The Farm Soho, 447 Broadway, 2nd Floor, New York, NY, 10013, United States
Join us on Monday, April 24, from 6:30 PM to 8:30 PM to celebrate World Hemophilia Day!
All community members are invited to join us for dinner, followed by an empowering and educational experience through Sanofi’s One Family program: Sharing the Power of Protection. With the right information, the global hemophilia community can take steps to feel more connected and protected. That’s what this year’s One Family program is all about. Here, you can engage in interactive, hands-on activities and opportunities to learn about:

Factor activity, pharmacokinetics, and why they matter
Bleed protection and lifestyle
Telling you story as a form of self-advocacy
The importance of community connection

Registration

Please register by Thursday, April 20.
The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

This event is sponsored by Sanofi.
Register Here

HFA Symposium
2023-04-13 - 2023-04-15
The Hemophilia Federation of America is heading to Orlando for what is shaping up to be their biggest and best Symposium yet from April 13 to April 16, 2023.
They will have dozens of sessions for blood brothers, blood sisters, children, parents, caregivers and more, along with great opportunities to connect with the friends you love to see each year. You won’t want to miss their Final Night event as they end with a splash at SeaWorld!
Learn More and Register

In The Know
2023-04-02 10:00 - 14:30 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Our 3rd Annual In The Know Treatment Decision Making Summit will be held on Sunday, April 2 from 10 AM to 1 PM at the NYCHC Office (enter at 205 W. 37th St., New York, NY 10018).
With treatment options changing rapidly for our community, it is extremely important for patients and families to stay informed of the latest options available to them. This Summit will allow bleeding disorder patients to learn more about specific products or treatment options in order to help our community make informed decisions regarding their choice of care.
This event will feature:

Bleeding Disorders Innovation Update
Sessions on treatment options for hemophilia A, hemophilia B, and Von Willebrand’s Disease (vWD)
Child and Teen activities
Lunch will be provided.

Registration

Please register before March 29.
The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here

Albany Days
2023-03-18 - 2023-03-20
Join the New York State Bleeding Disorders Coalition for Albany Days as advocates from all over New York State mobilize and advocate in support of several key bills. Individuals and families are encouraged to participate in this legislative day.
This will take place from Saturday, March 18 to Monday, March 20.
Apply Here

Cena con sesión educativa en Español
2023-03-13 18:30 - 20:30 | The Mary Lane, 99 Bank St, New York, NY, 10014, United States
A nuestras familias latinas las invitamos a participar en una presentación educativa acompañada por una deliciosa cena gratuita, completamente en español el lunes 13 de marzo a las 6:30 p. m. en el restaurante ‘The Mary Lane’ ubicado en: 99 Bank St, New York, NY, 10014.
El tema de la sesión será “Conocimientos sobre el factor: Los niveles más altos de actividad del factor importan”
¿Cuánto sabe sobre el factor? Un gerente en educación y relaciones comunitarias (CoRe) de Sanofi explicará en detalle la importancia de los niveles de actividad de los factores y por qué importan. Hablaremos sobre cómo la farmacocinética para ver por qué los niveles de factor son más que simplemente valores máximos y mínimos.
Esta sesión es patrocinada por Sanofi.
Detalles del Registro

El espacio es limitado.
Se proporcionará una cena, sin cargo, a todos los asistentes.
Este evento es para personas con un desorden de coagulación y familiares que vivan en la misma casa y su domicilio se encuentre dentro del área tri estatal.
Política de cancelación: al registrarte a este evento, aceptas la siguiente política de cancelación: En caso de cancelar tu registro a la cena una semana antes de llevarse a cabo, se cobrará una tarifa de $25 por persona. En caso de tener una emergencia personal o médica, comunícate con nosotros para analizarla.

Regístrate aquí

Educational Dinner
2023-03-13 18:30 - 20:30 | Market Table, 54 Carmine Street, New York, NY, 10014, United States
Join us for an educational dinner on Monday, March 13 at 6:30 PM at Market Table (54 Carmine St., New York, NY 10014). In addition to enjoying an incredible meal, attendees will also leave with a better understanding of hemostasis and the clotting cascade.
This educational program will review the clotting fundamentals, providing an understanding about hemostasis, the clotting cascade, and what happens when you have a bleed. Our speaker will discuss how factor behaves in the body, including the relationship between FVIII and von Willebrand Factor (vWF) for people with Hemophilia A and FIX in people with Hemophilia B.
This session is supported by Sanofi.
Registration Information

Space is limited.
Dinner will be provided, free of charge, to all attendees.
This event is open only to people with bleeding disorders and family members living in their immediate household from the New York City tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Register Here

Washington Days
2023-03-08 - 2023-03-10
NHF’s Washington Days is an opportunity for people affected by inherited blood disorders to advocate for issues that are important to them. Each year, roughly 400 volunteer advocates from 45 states come together to meet with legislators and staff to discuss federal funding for bleeding disorder programs and support policies that increase affordability of coverage and access to care.
After two years of holding this event virtually, Washington Days 2023 will be in-person once again! Join us from March 8 to March 10!
Learn More and Register Here

Walk Kick-Off Breakfast
2023-02-26 09:00 - 11:00 | Bareburger, 535 LaGuardia Place, New York, NY
Our Annual Unite for Bleeding Disorders Walk is our largest fundraiser of the year and helps us bring the entire bleeding disorders community together to support one another while raising awareness.
Previous walk team captains and prospective team captains are invited to our Walk Kick-Off Breakfast to officially launch our 2023 Unite for Bleeding Disorders Walk! Join us on Sunday, February 26 at 9 AM at Bareburger (535 LaGuardia Pl New York, NY 10012).
Registration

Previous team captains (from any year) and their families are invited to attend.
Prospective team captains and their families are invited to attend to learn more about our Walk, learn how easy it is to make your own team, and hear from other captains about ways they were successful in raising funds and awareness in the past.
The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Breakfast will be provided.

Register Here

Cocinando en Familia
2023-02-12 17:00 - 18:30
NYCHC invita a las familias latinas a preparar galletas para celebrar el Día de San Valentin via zoom.
Domingo 12/Feb/23
5 Pm
Confirma tu asistencia con Nelly Miranda antes del 6/Feb enviando un email a
nelly.miranda@nyhemophilia.org o envía un mensaje de texto al # (551) 243-3066.
El Chapter enviará los ingredientes a tu casa.

Infusion Training & Lunch
2023-01-29 11:30 - 14:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Join us on Sunday, January 29, from 11:30 AM to 2 PM for our Infusion Training and Lunch.
This will be held at the NYCHC Office. The entrance is located at 205 W. 37th St., New York, NY 10018. When you arrive, please join us on the 8th Floor. Lunch will also be provided.
This small gathering will feature hands-on instructions for self-infusion techniques of peripheral IV, port access, and subcutaneous injections.

Self-infusion will be covered, in addition to infusing someone else (i.e. a child).
All ages and skill levels are invited to join us, whether you would like to learn more about the infusion process, or you wish to perfect your skills.
Patients are welcome to bring their medication and supplies if they would like to treat at the program. Maria Barros, RN BSN, will lead the program alongside Hope Woodcock-Ross, RN BSN.

Registration

Please register before January 25.
The event is free for our community members. This event is open to anyone with a bleeding disorder and their family, living in their immediate household, from the NYC tri state area.
Cancellation Policy: By registering for this event, you agree to the following cancellation policy. If you cancel your registration within one week of the event or do not show up for the event, you will be charged a $25 per person fee. If you are experiencing a personal or medical emergency, please contact us to discuss.

Thank you to BDRN for supporting this event.
Register Here
