NYC Hemophilia Chapter

Educational Dinner
2023-03-13 18:30 - 20:30 (America/New_York) | 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

Webinar: Coping with Persistent Pain
2022-12-01 20:00 - 21:00
We’re hosting an educational webinar on Thursday, December 1 at 8 PM. This session will provide an overview of coping with persistent pain in the general population as well as how it may impact those with hemophilia. Emphasis will be placed on the impact of persistent pain, individual assessment of pain, and ways to communicate with your health care team.
This presentation is sponsored by Pfizer.
Register Here

Education Day
2022-11-20 10:00 - 16:00 | The Westin Times Square, 270 W 43rd St, New York, NY, 10036, United States
Join us on Sunday, November 20, from 10 AM to 4 PM for Education Day at The Westin Times Square!
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

New Family Welcome Reception
Ask the Experts Panel
Infusion Refresher
Featured Sessions: The Path to Gene Therapy Approval, Joints and Ultrasounds, VWD and Research Priorities, Preparing for a Surgery with a Bleeding Disorder, and more.
En Español Track
Interactive and fun Kids Track and Teen Track
NYCHC Three Year Strategic Plan

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

Virtual Rap Session: Job Readiness
2022-11-15 19:30 - 20:30
We’re hosting an interactive virtual rap session on Tuesday, November 15 at 7:30 PM to talk about all things related to career prep.
From resumes and cover letters to LinkedIn profiles and interviews, this informal conversation will answer all of your burning questions around how to get your foot in the door with your next big employer. If you’re thinking about taking that next big leap in joining the workforce, transitioning careers, or maybe re-entering your field after taking a few years off, then we hope you’ll join us for your ultimate guide to landing your next job!
This presentation is sponsored by the Hemophilia Federation of America.
Register Here

About Our Speaker
Dr. April Willis has worked at the campus, district, and state levels of education and holds certifications in the Superintendency, Principalship, and eight teaching roles. She currently serves as the principal Business Coach and Consultant for April Willis Consulting, LLC. She has a team of seven individuals who support non-profits, small businesses, and start-ups with all operations and back-office support. April has also been supporting the hemophilia community through her work with the Coalition for Hemophilia B for the past two years in an Education and Development role.
April is part of the Forbes Coaches Council, President of Hutto Women’s Alliance, and active leader with the Junior League of Austin, a member of Social Venture Partners Austin, and sits on several City boards for her community.
April holds a Doctorate and three Master’s degrees, including an MBA. She has published two books on achieving academic & professional excellence, as well as founded a scholarship in its 6th year to invest in students who can prove they will make a difference in the world by leading with confidence and integrity.

Females and Bleeding (FAB) Women's Retreat
2022-11-04 16:00 - 2022-11-05 15:00 | Minerals Resort and Spa, 2 Chamonix Dr, Vernon Township, NJ, 07462, United States
We are partnering with the Hemophilia Association of New Jersey (HANJ) to host our first-ever Females and Bleeding (FAB) Women’s Retreat! Join us for an overnight stay at the Minerals Resort and Spa in Vernon, NJ from Friday, November 4 to Saturday, November 5.
The weekend will feature educational sessions, social activities, health and wellness workshops, breakout sessions, and much more! The focus will be education, personal growth, and networking.

Retreat and Agenda Overview

Start: Friday at 4 PM
End: Saturday at 3 PM
Agenda: See the agenda here.
Hotel: Hotel rooms will be provided for Friday evening.
Meals: All meals during the retreat are included.
Amenities: Crystal Springs Resort amenities will be accessible to you outside of our scheduled programming. This includes: spa, pool, fitness club. Additional fees may apply to certain activities. Learn more.

Registration Information
This retreat free to attend. Space is limited to only 30 women.
This retreat is open to women who:

Registrants must 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, who 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.

Thank you to Octapharma for supporting this event.
Register Here

Halloween Playdate
2022-10-30 11:00 - 13:00 | Little Brilliant Minds, 5916 20th Ave, Brooklyn, NY, 11204, United States
We’re hosting a Halloween Playdate for families in the bleeding disorders community! Families with kids ages 10 and under with a bleeding disorder are invited to join us on Sunday, October 30 from 11 AM to 1 PM for our Halloween themed Playdate at Little Brilliant Minds (5916 20th Ave in Brooklyn).
Costumes for kids are encouraged as we connect with other families, decorate pumpkins and masks, enjoy face painting, and more. Lunch will be provided to all attendees, along with some special halloween candy!
Event Information

This event is intended for families with kids, ages 10 and under, who have a bleeding disorder.
Halloween costumes are encouraged.
Lunch will be provided.

Registration

The event is free for our community members. You must be a person with a bleeding disorder or live in a household with an immediate family member that has a bleeding disorder.

Register Here

Unite Walk 2022
2022-10-09
Our 2022 Unite for Bleeding Disorders Walk will be held on Sunday, October 9 at Prospect Park in Brooklyn!

Learn more at www.NYCHCWalk.org!

NYCHC Outing at the New York Mets
2022-09-27 19:00 - 22:00 | Citi Field, 41 Seaver Way, Queens, NY, 11368, United States
On Tuesday, September 27 at 7 PM, NYCHC is taking you out to the ballgame! Join us as we root for the home team, the New York Mets, as they take on the Miami Marlins at Citi Field in Queens.
As an added bonus, all attendees in our group will receive a free David Wright Jersey, courtesy of the Mets.
Event Information

Each registered attendee will receive a free ticket for the ballgame. Tickets are valid for September 27 only.
Tickets will be emailed to you directly to the email address you use to register for this event.
All NYCHC attendees will be seated together in Section 142 (Big Apple Reserve).
The event will happen rain or shine, unless the New York Mets cancel the game due to inclement weather.

Registration

The event is free for our community members. To be eligible, you must be a person with a bleeding disorder or live in a household with an immediate family member that has a bleeding disorder.
Seats are limited and available on a first come first serve basis.
Thank you to BDRN for making this event possible!

Register Here

Back to School (Regreso a Clases)
2022-09-18
On Sunday, September 18, we will host our Annual Bilingual Back to School Event. This event was designed to help your family transition out of summer and get ready to return to school.
El domingo 18 de septiembre, tendremos nuestro evento anual ‘Regreso a Clases’ con sesiones en inglés y español. Esta vez se realizará de forma virtual y está diseñado para ayudar a tu familia con la transición del fin del verano y prepararse para el regreso a la escuela.

If you have a child with hemophilia, von Willebrand Disease (vWD), or another bleeding disorder, school can be hard to navigate. It is important to know the resources available to you.
Every Fall, we host our Bilingual Back to School Event to help families in our community prepare to return to school. This year’s event will be held on Sunday, September 18 from 11 AM to 3 PM at the New York Marriott Downtown.
Topics Include:

Infusion Training
504s and IEPs
Goal Setting
Career Paths and Potential
Protecting Your Joints
Improv Workshop and Performance (for kids and teens)
A full agenda will be shared before the event.

School Supplies
To help you prepare to go back to school, NYCHC will provide a $35 gift card to each school aged child that attends. Gift cards are for children with bleeding disorders and their siblings only.
Registration

This program is free!
Lunch will be provided to all attendees.
This event is open only to families with bleeding disorders from the New York City tri state area.

Register Here
Health and Safety Guidelines

Mask wearing is optional for all attendees.
Please stay home and do not attend the event if you have tested positive for COVID-19, are waiting for COVID-19 test results, have COVID-19 symptoms, feel sick or unwell, or if you have had close contact with a person who has tested positive for or who has symptoms of COVID-19.

NHF Bleeding Disorders Conference
2022-08-25 - 2022-08-27
The National Hemophilia Foundation (NHF) is hosting the 74th Annual Bleeding Disorders Conference (BDC) in-person this summer from August 25-27 in Houston, Texas!
For those who can not go to Houston in-person, 28 hours of selected sessions from the Consumer, Teen, and Chapter tracks will be live-streamed. Learn more and register at: hemophilia.org/bdc

TORCH Teen Retreat
2022-08-12 - 2022-08-14 | PEEC, 538 Emery Rd, Dingmans Ferry, PA, 18328, United States
Our TORCH Teen Retreat will be held from Friday, August 12 to Sunday, August 14 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 12 at 3 PM.
Arrive between 2:30 and 2:45.
Location: West 31st Street (between 7th and 8th Ave.), near the corner of 8th Ave.
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 22.

Health and Safety Guidelines

Mask wearing is optional for all attendees.
Please stay home and do not attend the event if you have tested positive for COVID-19, are waiting for COVID-19 test results, have COVID-19 symptoms, feel sick or unwell, or if you have had close contact with a person who has tested positive for or who has symptoms of COVID-19.

Register Here

Golf Tournament and Dinner
2022-07-18 10:00 - 20:00 | Westchester Hills Golf Club, 401 Ridgeway, White Plains, NY, 10605, United States
Join us on Monday, July 18 for our 2nd Annual Tee Up For A Cure Golf Tournament and at our Night Under The Stars Dinner Reception immediately after. 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 about our Golf Tournament and Dinner by clicking here.

Walk Kick Off
2022-06-05 | Bronx Zoo, 2300 Southern Boulevard, Bronx, New York, 10460
Join us for a fun day at the Bronx Zoo on Sunday, June 5 from 11:30 AM to 4 PM as we officially launch the NYC Hemophilia Chapter’s 2022 Unite Walk!
This day will help families, individuals, and Walk Teams come together to learn more about our Unite Walk on Sunday, October 9. This will include tips on fundraising, resources, and more.
Event Details

A boxed lunch and bottled water will be served to all registered attendees with a wristband.
After brief remarks and lunch, you will be able to explore the Zoo on your own and interact with other members of our community.
The event will happen rain or shine (rain ponchos will be available if needed).

Registration Information

During this difficult time, we have waived all registration fees for this event. If you are able to make a donation to help support this event, as well as our other programs and services, you will have the option to place a donation on the following page when securing your tickets.
Registration will end on Wednesday, June 1.
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.

Health and Safety Guidelines

Mask wearing is optional for all attendees.
Please stay home and do not attend the event if you have tested positive for COVID-19, are waiting for COVID-19 test results, have COVID-19 symptoms, feel sick or unwell, or if you have had close contact with a person who has tested positive for or who has symptoms of COVID-19.

Register Here
– – – – – – – – – – – – – – – – – – –
Te invitamos a participar con nosotros en el Zoológico del Bronx el domingo 5 de junio de 11:30AM a 4PM, este evento marcará el inicio de la campaña de la Caminata 2022 del Chapter de la Hemofilia de NY!
En este día hablaremos sobre cómo personas, familias, y equipos de años anteriores pueden participar en nuestra Caminata que está programada para el domingo 9 de Octubre. Aquí les daremos consejos en cómo recaudar fondos, formas de obtenerlos y más.
Detalles del evento

Los participantes recibirán una pulsera al registrarse, para más tarde recibir un almuerzo y agua embotellada.
Después de las palabras de bienvenida y disfrutar del almuerzo juntos, podrás explorar el zoológico por tu cuenta e interactuar con otros miembros de nuestra comunidad.
El evento se llevará a cabo aún con lluvia (tendremos ponchos para lluvia en caso de necesitarlos).

Información para registrarse

Hemos pasado por días difíciles a raíz de la pandemia, por lo que hemos absorbido el costo del evento. Si puedes hacer una donación para ayudar con los gastos de este evento, así como nuestros otros programas y servicios, tendrás la opción de hacerlo en la siguiente página cuando obtengan sus boletos.
La fecha límite para registrarse a este evento es el miércoles 1 de junio.
Este evento es únicamente para familias con un desorden de coagulación y su familia inmediata (que vivan en la misma casa) y se encuentren dentro del área tri estatal.

Protocolos de salud por Covid 19

El uso de cubrebocas es opcional para todos los asistentes.
Quédate en casa y no asistas al evento si tienes síntomas de COVID-19, estás esperando los resultados de la prueba de COVID-19, tienes una prueba positiva por COVID-19, te sientes enfermo o indispuesto, o si has tenido contacto cercano con una persona que ha dado positivo o tiene síntomas de COVID-19.

Registrarse Aquí

NYC AIDS Walk
2022-05-15 08:00 - 17:00 | Central Park- Great Hill
In the 1980s, many bleeding disorders community members contracted HIV and Hepatitis C after injecting contaminated anti-hemophilic clotting factor into their bodies. It is estimated that nearly ten thousand people with Hemophilia contracted HIV (and Hepatitis C) during this time period.
In honor of our community members who have passed away and those who still struggle with co-morbidities contracted from contaminated products, we are taking part in this year’s New York AIDS Walk.
Click below to join us in Central Park on Sunday, May 15 or to donate to our team. Together we can make a difference!
Walk With Us
Donate To Our Team

WFH World Congress
2022-05-08 - 2022-05-11
The World Federation of Hemophilia‘s 2022 World Congress is less than one month away, from May 8 to May 11 in Montreal, Canada!
The World Congress offers a unique opportunity to meet your global peers, learn from leading experts and hear firsthand about cutting-edge research. The event is hybrid, so whether you make the short trip to Montreal or participate virtually, you won’t miss a thing. View the program and register at: congress.wfh.org

Interactive Pottery Painting & Discussion
2022-04-30 16:30 - 18:30 | Plaster Palace Pottery, 2005 Palmer Avenue, Larchmont, NY, 10538, United States
On Saturday, April 30 from 4:30 PM to 6:30 PM, we will host a ceramic pottery painting session at Plaster Palace Pottery in Larchmont, NY!
The first half of this event will feature an interactive conversation about trusting your parental instincts when it comes to your child’s health. A local mom of a child with hemophilia will share her powerful and relatable story. Following the discussion, we will enjoy a pottery painting session along with dessert and refreshments.
Event Logistics

This event is free to attend.
The program is intended for parents.
Space is limited to the first 20 people who register.
Plaster Palace’s address is: 2005 Palmer Avenue, Larchmont, NY 10538.
There is a small parking lot at Plaster Palace and there is typically plenty of street parking available.

COVID-19 Guidelines

In line with local guidelines, mask wearing is optional for all attendees.
Please stay home and do not attend the event if you have tested positive for COVID-19, are waiting for COVID-19 test results, have COVID-19 symptoms, feel sick or unwell, or if you have had close contact with a person who has tested positive for or who has symptoms of COVID-19.

This event is supported by Optum and CSL Behring.
Register Here

Courageous Conversations
2022-04-28 19:00 - 20:00, 2022-04-21 19:00 - 20:00, 2022-04-14 19:00 - 20:00, 2022-04-07 19:00 - 20:00, 2022-03-31 19:00 - 20:00, 2022-03-24 19:00 - 20:00
We’re excited to introduce you to Courageous Conversations: a weekly chat to allow you to open up about your struggles, make connections, and feel supported.
Every Thursday at 7 PM, the group will meet weekly and will be run by Lisa Schoenfeld, a mom in the New York City bleeding disorders community. All conversations will remain confidential within the group. All community members are invited to participate.
Register Here

HFA Symposium
2022-04-20 - 2022-04-23
Shine those boots and saddle up! The Hemophilia Federation of America is heading to San Antonio for what is shaping up to be their biggest and best Symposium yet from April 20 to April 23, 2022.
Learn More

In The Know Treatment Decision Making Summit
2022-04-10 10:30 - 16:00 | New York Marriott Downtown, 85 West Street between Albany & Carlisle Streets, New York, NY, 10006, United States
Join us on Sunday, April 10 from 10:30 AM to 4:00 PM as we host: In The Know: Treatment Decision Making Summit at the New York Marriott Downtown.
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.
Sessions will provide information on:

Bleeding Disorders Innovation Update
Building Your Customized Decision Maps
Hemophilia A Treatment Options
Hemophilia B Treatment Options
Von Willebrand’s Disease Treatment Options
Educational sessions in Spanish
Child and Teen activities

Please register by Monday, April 4 at 5 PM.
Register Here

Health and Safety Guidelines

All attendees are asked to wear a mask, social distance, and participate in contact tracing if necessary.
To protect the health and safety of our community members, all attendees must be fully vaccinated and protected from COVID-19 by the date of this event.
If you have a medical or religious exemption, please submit a negative COVID-19 test to NYCHC within 72 hours before the event. Please note that we will be checking vaccination cards on-site.
Please stay home and do not attend the event if you have tested positive for COVID-19, are waiting for COVID-19 test results, have COVID-19 symptoms, feel sick or unwell, or if you have had close contact with a person who has tested positive for or who has symptoms of COVID-19. It will be your duty of care to inform NYCHC (info@nyhemophilia.org) that you will be unable to attend.

Albany Days
2022-03-26 - 2022-03-28
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 26 to Monday, March 28.
Due to COVID-19, attendance is limited. If you are interested in more information, please email NYCHC’s Executive Director, Jeremy Griffin, at jeremy.griffin@nyhemophilia.org.

Team IMPACT Webinar
2022-03-22 19:00 - 20:00
On Tuesday, March 22 at 7 PM, we will host a joint webinar with Team IMPACT to explore how children and teenagers with a bleeding disorder can overcome isolation and emotional trauma in the realm of sports and physical activities. This interactive webinar will give attendees an opportunity to learn more about how you can get involved with Team IMPACT.
During this webinar, we will hear from a previous Team IMPACT participant and their family as they share their experiences finding the true sense of belonging and camaraderie that comes with being part of a team — and the short and long term benefits that extend beyond the field.
About Team IMPACT:

Team IMPACT believes that all kids deserve to get in the game, regardless of physical condition or chronic illness.
To help tackle the emotional trauma and social isolation experienced by children facing serious and chronic illnesses by matching them with a college athletic team. This allows them to experience the true sense of camaraderie that comes with being part of a team.
Learn more about Team IMPACT by clicking here.

Register Here
