NYC Hemophilia Chapter

Educational Lunch & Fall Craft Activity
2024-09-21 11:00 - 14:00 (America/New_York) | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
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 will work on a Fall Centerpiece at the NYCHC Office (entrance located at 205 W 37th St.).
Join us to relax, learn and have fun together. This event will include:

Lunch for all in attendance.
Educational Session focusing on Women with Hemophilia, presented by Novo Nordisk.
Crafting Activity to make a festive fall centerpiece, conducted by Infucare.

Registration

The presentation will be conducted in English.
Space is limited to the first 20 people who register.
You must be 13 years old to attend.
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

NBDF's 76th Annual Bleeding Disorders Conference (BDC)
2024-09-12 - 2024-09-14 | Georgia World Congress Center, 285 Andrew Young International Blvd NW, Atlanta, GA, 30313, United States
The National Bleeding Disorders Foundation (formally NHF)’s 76th Annual Bleeding Disorders Conference (BDC) will take place from September 12 -14 in Atlanta, Georgia! This event brings the national bleeding disorders community together for educational sessions, valuable networking and social connection opportunities, exciting exhibits and so much more.
NBDF will be accepting travel scholarship applications to attend BDC from January 19, 2024 to February 23, 2024. Learn more about the scholarship.
Learn More & Register for BDC

Self Care Saturday
2024-08-31 11:00 - 14:00 | HARVEST KITCHEN, 269 Columbus Ave, New York, NY, New York, NY, 10023, United States
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 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.
Our afternoon will begin with lunch at Harvest Kitchen (269 Columbus Ave.) 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, we will get manicures nearby at QQ Nails (312 Columbus Ave.).

The presentation will be conducted in English.
Space is limited to the first 20 people who register.

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

Afternoon at the Ballgame
2024-08-04 15:00 - 19:00 | Staten Island University Hospital Community Park, 75 Richmond Terrace, Staten Island, NY, 10301, United States
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 on the Hagerstown Flying Boxcars!

Agenda Overview

3:00 PM Pick Up Tickets at Staten Island University Hospital Community Park, Staten Island, NY.

Tickets will be reserved under your name. Please get them from the Will Call window at the ballpark.
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).

3:15 PM – Educational Presentation Begins. Attendees will enjoy a short presentation to help you prepare your child with a bleeding disorder to safely participate in sports and physical activities. Attendees will gain valuable insights into managing bleeding risks, communicating effectively with school nurses, coaches, and physicians, and making informed decisions about sports involvement.
4:00 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 the ballpark and watch the ballgame. Tickets are valid for Sunday, August 4 only. Attendees will pick up their tickets at the Will Call window at 3 PM.
Location: All NYCHC attendees will be seated together in a suite exclusively for our party with indoor and outdoor seating.
Food: Attendees in our group will receive all-inclusive ballpark fare (hot dogs, cheeseburgers, chicken tenders, french fries, salad, popcorn and soft drinks).
Weather: The event will happen rain or shine, unless the venue cancels the game due to inclement weather.
Car Parking: The Empire Outlet Mall lot on Wall Street.
Transit: Staten Island Railway, Staten Island Ferry and the NYC Fast Ferry all go to St. George Terminal, right next to the ballpark.

Registration

Space is limited to the first 18 people to register.
Please register before Wednesday, July 31.
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 Genentech and CVS Specialty Pharmacy for supporting this event.

Register Here

Navidad en Agosto
2024-08-03 11:00 - 14:00 | NYCHC Office, 500 7th Avenue, 8th Floor, New York, NY, 10018, United States
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 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.
Dirección: 205w 37th St., NY, NY 10018 (Edificio We Work)
Regístrate antes del 30 de Julio con el siguiente link.
Registrar aquí
Para más información comunícate con Nelly Miranda al número 551-243-3066 o enviando un email a: nelly.miranda@nyhemophilia.org.

Sewing and Self-Care
2024-06-23 11:00 - 14:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
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 relax, find a new hobby, and discover the therapeutic benefits of creating something with your own hands while!
The event will include:

Sewing: Attendees will learn basic sewing skills before using a sewing machine to make a unique bag that they can take home with them.
Lunch: will be served to all in attendance.
Educational Session: The educational presentation will be held in both English and Spanish and is sponsored by Genentech.

Registration

Space is limited to the first 20 people who register.
You must be 16 years of age, or older.
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

Unite for Bleeding Disorders Walk
2024-06-02 10:00 - 13:00 | Flushing Meadows Corona Park, Queens, NY, 11354, United States
The New York City Hemophilia Chapter (NYCHC) hosts an annual 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 19th Annual Unite Walk on Sunday, June 2 at Flushing Meadows Corona Park in Queens! We are reaching higher than ever before with a goal of raising $150,000. Please consider forming a team or joining an already existing team. Any amount you raise makes a difference.
Learn More Here

Educational Lunch: Advocacy and Self Care
2024-05-25 11:00 - 14:00 | HARVEST KITCHEN, 269 Columbus Ave, New York, NY, New York, NY, 10023, United States
Moms and teen girls in our community are invited to join us on Saturday, May 25 at 11 AM for an afternoon of lunch, advocacy and self care!
Our afternoon will begin with lunch at Harvest Kitchen (269 Columbus Ave.) 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, we will get manicures nearby at QQ Nails (312 Columbus Ave.).

The presentation will be conducted in English.
Space is limited to the first 15 people who register.

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

Educational Dinner: Shared Decision Making
2024-05-22 18:30 - 20:30 | Meaux Space, 305 7th Ave., 17th Floor, New York, NY, 10001, United States
On Wednesday, May 22 at 6:30 PM, we are partnering with Sanofi to host an educational dinner at Meaux Space (305 7th Ave., 17th Floor, New York, NY 10001).
In addition to enjoying an incredible meal, you will also leave with a better understanding of how to partner with your care team to make treatment and management decisions. The educational presentation will be given via a nation-wide live-stream for chapters around the country and will include tips from a physician, a patient’s perspective, and an interactive hands-on activity led by GutMonkey.

The presentation will be conducted in English.
Families of all ages are invited to attend.

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.

Thank you to Sanofi for making this event possible.
Register Here

Día de las Madres
2024-05-11 11:00 - 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 mamás de la comunidad latina con un desorden de coagulación a celebrar el Día de las Madres el sábado 11/Mayo a las 11am con una sesión educativa en la que hablaremos de ‘Abogacía’ y después tendremos una actividad manual donde haremos ‘Diamond Painting’. Almuerzo incluido.
Dirección: 205w 37th St., NY, NY 10018 (Edificio We Work)
Regístrate antes del 3/Mayo con el siguiente link
Para más información comunícate con Nelly Miranda al número (551) 243-3066 o enviando un email a: nelly.miranda@nyhemophilia.org

A Day At The Zoo with NYCHC
2024-05-05 11:30 - 17:00 | 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, May 5, 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.

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.

Please note: this event is for people in your immediate household. Please do not invite extended family members or friends, as resources are limited.

Register Here

Infusion Training and Lunch
2024-04-28 11:30 - 14:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Join us on Sunday, April 28, from 11:30 AM to 2 PM for our Infusion Training and Lunch at the NYCHC Office (entrance is located at 205 W. 37th St., New York, NY 10018).
This small gathering will feature hands-on infusion and injection instruction and guidance from trained medical staff.

Patients of all ages and skill levels are invited to join us, whether you would like to learn more about the infusion process or wish to perfect your skills.
Parents, guardians and other caretakers are also invited to attend to learn how to infuse on someone else (i.e. a child).
The medial team will provide infusion techniques for peripheral IV, port access, and subcutaneous injections.
Please bring your own medication and supplies if you would like to infuse while at the training.

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.

Thank you to BDRN for making this event possible.
Register Here

PULSE for Bleeders - Teen Meet Up
2024-04-13 11:00 - 13:00 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
PULSE for Bleeders (Promoting Unity, Leadership, and Support for Empowerment) is a new group in the NYCHC Community! PULSE was designed by and for teens in our community 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.
Our next get together will be on Saturday, April 13 from 11 AM to 1 PM at the NYCHC Office (205 W. 37th St.). We will use this time to set goals for our group, work on shaping our advocacy efforts for the year ahead, and start to plan member-specific initiatives.

Pizza will be provided for lunch
Meet new friends from our community
Unaffected teen siblings are also encouraged to attend
Take a leadership role in planning our 2024 Teen Events

The teens will get together regularly to do fun events and activities that they plan. To join the PULSE contact list, sign up below!
Sign Up Here

HFA Symposium
2024-04-11 - 2024-04-14 | JW Marriott Indianapolis, 10 S West Street, Indianapolis, IN, 46204, United States
The Hemophilia Federation of America (HFA) is heading to Indianapolis for their annual Symposium! Join them for this year’s conference from Thursday, April 11 to Sunday, April 14 at the JW Marriott Indianapolis in Indianapolis, Indiana.
They will have dozens of sessions for blood brothers, blood sisters, children, parents, caregivers and more, along with great opportunities to connect with the new and old friends from around the country. A limited number of travel scholarships are provided by HFA. Learn more about their scholarship offerings by clicking here.
Learn More and Register

In The Know Treatment Decision Making Summit
2024-04-06 10:00 - 14:30 | NYCHC Office (WeWork), 205 W. 37th St., New York, NY, 10018, United States
Our 4th Annual In The Know Treatment Decision Making Summit will be held on Saturday, April 6 from 10 AM to 2:30 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

Community Conversations: Navigating Childhood with Bleeding Disorders
2024-03-21 19:00 - 20:30 | NY
Join us on Thursday, March 21 at 7 PM for a webinar focusing on guiding your child through the early years of life with a bleeding disorder with an emphasis on the mental health related aspects that come along with a new diagnosis.
Dr. Regina Legere-Buccellato, a Clinical Psychologist and mom of two sons with hemophilia, and Dr. Julia Golier, a psychiatrist and mom of two, including a son with hemophilia, will lead this session delving into practical strategies for managing the daily challenges associated with bleeding disorders. They will cover topics such as early diagnosis, treatment plans, fostering independence, and integrating safe play and education. Whether you’re new to the bleeding disorder community or looking to deepen your support network, this webinar will provide you with valuable resources, peer support, and the confidence to empower your child at every stage of their development.
Register Here

Albany Days
2024-03-16 - 2024-03-18 | NY
Join bleeding disorders advocates from across New York State for Albany Days from Saturday, March 16 to Monday, March 18. Whether you are new to advocacy, or you’re an experienced advocate, you can help us make a difference!
This three-day program will feature a fun and interactive advocacy training on Saturday and Sunday followed by meetings with your Senator, Assemblymember or their staff at the State Capitol on Monday. New to advocacy? It’s easy! You will be paired with seasoned advocates during your meetings so you have nothing to worry about.

Individuals and families of all ages are encouraged to participate.
Hotel accommodations and food during the program will be provided at no cost.
Travel assistance is also available, if needed, to help you get to and from Albany. Learn more and apply for travel assistance here.

Applications to attend Albany Days be accepted until Tuesday, February 13.
Apply For Albany Days Here

VIP Experience: NYC Movie Premiere of Redefining Impossible
2024-03-03 11:00 - 13:00 | Angelika Film Center, 18 W. Houston Street, New York, NY, 10012, United States
You’re invited to the New York City Premiere of the inspirational film, Redefining Impossible: a film that highlights the stories of five athletes living with hemophilia and how they refused to let their bleeding disorder stop them from participating in the activities they love!
Join us for this VIP Experience at Angelika Film Center (18 W. Houston St), on Sunday, March 3 at 11 AM!

Movie admission tickets will be provided at no cost to you.
The film audio is entirely in English.

Registration Information

Space is limited to the first 100 registrants.
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
About Redefining Impossible (Watch The Preview Here)
Five elite athletes living with hemophilia share their stories of falling in love with sport, being told that they couldn’t play because of their condition, suffering through injuries and persevering to redefine what’s possible for people living with hemophilia. Living with a bleeding disorder means continuously hearing what you can’t do, particularly when it comes to sport and athleticism. Now with the help of doctors and new and improved treatment options, athletes living with hemophilia are able to push themselves further than ever before, to establish new boundaries for themselves and others who are tired of being told “no.”
The documentary features powerful stories from:

Hazri, an open-water swimmer from Kuala Lumpur, Malaysia, finds solace in the water, where his body feels less pain.
Jessica, a former rugby player from Oxford, England, battles the medical community’s misconceptions about women and bleeding disorders.
Anthony, a fourth-degree black belt from Rhode Island, finds his strength in martial arts.
Riccardo, an ultrarunner from California (originally from Mexico), conquers enormous distances.
Elijah, a former elite swimmer from Colorado, excels in the water.

This film was created by Believe Limited.

Virtual Diamond Painting Session
2024-02-29 19:00 - 20:00 | NY
Join us on Rare Disease Day, Thursday, February 29 at 7 PM, for a unique and fun evening of Diamond Painting over Zoom as we celebrate the strength and resilience of our community. Just as diamonds are some of the rarest gems on earth, so too are the experiences of those living with a bleeding disorder. We will use these rare gemstones to make unique pieces of art.
Diamond painting is a blend of paint-by-numbers and cross stitch. Led by NYCHC Board Member, Alice, who found solace in diamond painting during her recovery after ankle surgery, this session promises fun and relaxation. Join us as Alice shares her passion for this easy, affordable, and delightful pastime.

No previous crafting experience or artistic ability is required.
Kits will be provided free of charge.
One diamond painting kit will be provided per household.

Registration Information

Space is limited to the first 20 registrants.
Please register before Thursday, February 22 to receive your supplies in time.
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

Community Conversations: Research Inspiration
2024-02-28 19:00 - 20:30 | NY
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 | NY
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
