NYC Hemophilia Chapter

Finding Your Inner Joy: Episode 6
2021-04-05
Learn More and See The Episode Here

Virtual Game Night
2021-04-02 19:00 - 20:00 UTC
The New York City Hemophilia Chapter (NYCHC) and the New England Hemophilia Association (NEHA) are excited to host a monthly game night on the first Friday of every month!
Join us on Friday, April 2 at 7 PM as families from our communities come together for a night full of fun, community, and laughs.
Register Here

vWD Community Chat
2021-03-31 13:00 - 14:00
On Wednesday, March 31 at 1 PM, we are hosting our next virtual chat for community members with vWD.
Join us as we come together as a community to share our experiences and connect with others.
Join The Chat Here

Inhibitor Chat
2021-03-30 18:30 - 19:30
This series of chats are designed to keep our inhibitor families connected and informed about the latest science and research around inhibitors. Patients will share real world experiences of how their current treatment is working and outline areas for future research and development. The setting will be informal, but guest speakers will be invited from time to time to share the latest developments.
This month’s chat will take place on Tuesday, March 30 at 6:30 PM.
Register Here

Blood Brothers Chat
2021-03-30 13:00 - 14:00, 2021-03-23 13:00 - 14:00, 2021-03-16 13:00 - 14:00, 2021-03-09 13:00 - 14:00, 2021-03-02 13:00 - 14:00, 2021-02-23 13:00 - 14:00, 2021-02-16 13:00 - 14:00, 2021-02-09 13:00 - 14:00
Every Tuesday at 1 PM, we host a virtual chat for men with a bleeding disorder.
Join us as we come together as a community to share our experiences and connect with each other.
Join Here

Finding Your Inner Joy: Episode 5
2021-03-29

Moms' Paint & Sip Night
2021-03-26 18:30 - 20:30
On Friday, March 26 at 6:30 PM, we are hosting a paint and sip night for moms within the New York City bleeding disorders community.
Artist Judy Cohen will lead us over Zoom in painting during the event. All are welcome to participate: whether you consider yourself an artist or have never picked up a paintbrush before!
Attendees will be mailed all necessary supplies prior to the session including a canvas, paint, and paint brushes.
Please register by Friday, March 12. Space is limited to the first 25 women to register.
During this difficult time, we have chosen to cover all supply costs for each participant of this event. If your family is able to make a donation to help support this event and our other programs and services, we would greatly appreciate the it. Donations can be placed when registering through Eventbrite on the next page.
Please note: this event is limited to individuals within the bleeding disorders community living in the New York City tri state area.
Register Here

Finding Your Inner Joy: Episode 4
2021-03-22

Virtual READY Teen Retreat
2021-03-21
The Virtual Regional Education Advocacy Development for Youth (READY) Teen Retreat is a free leadership program that teaches teens the ins and outs of advocacy and gives participants the opportunity to use these skills at the State level. This will take place on Saturday, March 20 before taking part in Virtual Albany Days from Sunday, March 21 – Tuesday, March 23.
Teens will learn how to tell their story and will have the opportunity to utilize your advocacy skills when they speak to legislators at Virtual Albany Days. The retreat will be filled with interactive games and sessions.
This program is for ages 13 – 18 and is FREE to all attendees. You must live in New York State and either have a bleeding disorder, be a carrier, or be a family member of someone with a bleeding disorder in order to attend.
***If you register for the READY Program, you do not need to additionally register for Albany Days.***
Regular registration closes on Friday, March 5, 2021. Late registration closes on Friday, March 12, 2021.
If you have any questions, please contact Lindsay Cox, the New York State Bleeding Disorders Coalition’s Coalition Manager, at lindsay.cox@nyhemophilia.org.
Register Here

Virtual Albany Days
2021-03-21 - 2021-03-23
Join the New York State Bleeding Disorders Coalition for Virtual 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 Sunday, March 21 to Tuesday, March 23.
During a pre-meeting Advocacy Skills & Knowledge (ASK) training, attendees become more comfortable with the issues and receive various training tools and resources enabling them to meet their legislators (or representatives) to express their views.
Participants have the opportunity to meet face-to-face with lawmakers and staff who shape statewide healthcare policy, and become more informed on critical issues that affect continued access to quality care and learn effective grassroots advocacy techniques. This productive and informative program offers a unique experience for members and families of the bleeding disorders community to work together for the good of the community.
You must live in New York State and either have a bleeding disorder, be a carrier, or be a family member of someone with a bleeding disorder in order to attend.
Regular registration closes on Friday, March 5, 2021. Late registration closes on Friday, March 12, 2021.
If you have any questions, please contact Lindsay Cox, the New York State Bleeding Disorders Coalition’s Coalition Manager, at lindsay.cox@nyhemophilia.org.
Register Here

Moms and Women Community Chat
2021-03-18 13:00 - 14:00
On Thursday, March 18 at 1 PM, we are hosting our next virtual chat for moms and women with a bleeding disorder.
Join us as we come together as a community to share our experiences and connect with others.
Join The Chat Here

Finding Your Inner Joy: Episode 3
2021-03-15

Teen Escape Room
2021-03-12 19:00 - 20:30
Join us on Friday, March 12 at 7 PM for a Virtual Escape Room for teenagers within the New York City bleeding disorders community alongside the Hemophilia Association of New Jersey (HANJ)!
In teams of four, participants will race to discover the mystery left behind by their best friend. She says she has a secret that she has to tell you, but every time she gets close to disclosing, something happens and the mystery remains. By following the clues she leaves behind, can you figure out her secret before it’s too late?
This program has a bleeding disorder theme and focuses on issues of disclosure, peer support, and transitioning to life as an adult. It plays much like a virtual escape room, with a follow up discussion and time for interaction at the end.
This event is intended for teens ages 14 and over.
Register Here

Finding Your Inner Joy: Episode 2
2021-03-08

Virtual Game Night
2021-03-05 19:00 - 20:00
The New York City Hemophilia Chapter (NYCHC) and the New England Hemophilia Association (NEHA) are excited to host a monthly game night on the first Friday of every month!
Join us on Friday, March 5 at 7 PM as families from our communities come together for a night full of fun, community, and laughs.
Register Here

Cocinando en Familia
2021-03-02 18:00 - 20:00
El Chapter de la Hemofilia de NY (NYCHC) te invita a participar a nuestro próximo evento “Cocinando en Familia” este martes 2 de Marzo del 2021 de 6PM a 8PM dirigido para la comunidad latina (en español).
Te pedimos que te registres aquí para que te enviemos la receta, el enlace del zoom y los ingredientes.
No hay mejor forma de celebrar con la comunidad que alrededor de la mesa. No se pueden perder este evento y ahí nos vemos.
Este evento está dirigido a familias con un desorden de coagulación y viviendo en el área tri estatal. Registrate antes del 24 de Febrero para que puedas recibir los ingredientes.

Registrate Aqui

Finding Your Inner Joy: Episode 1
2021-03-01

Virtual Washington Days
2021-03-01 - 2021-03-05
NHF’s Washington Days is an opportunity for people affected by bleeding disorders to advocate for issues that are important to them. In 2020, Washington Days had more than 450 volunteer advocates from 45 states that met with legislators and staff to discuss federal funding for bleeding disorder programs and access to skilled nursing facilities (SNFs). The issues and priorities for 2021 Washington Days will be announced later this year.
Please note that Washington Days 2021 will be a virtual experience. Washington Days programming will take place during the dates of March 1-5. More programming details will be announced soon.
For reference, please click here to see the 2020 agenda. An updated agenda for the 2021 events will be released closer to the conference.
Preparatory webinars were hosted for the 2020 event. Similar webinars will be planned for February 2021.
To see our Washington Days Frequently Asked Questions click here. For any other questions or concerns, please contact: advocate@hemophilia.org.
Learn More Here

February Paint Night
2021-02-26 18:30 - 20:30
On Friday, February 26 at 6:30 PM, we are hosting a paint night for families in the New York City bleeding disorders community.
Artist Judy Cohen will lead us over Zoom in painting during the event. All are welcome to participate: whether you consider yourself an artist or have never picked up a paintbrush before!
Attendees will be mailed all necessary supplies prior to the session including a canvas, paint, and paint brushes.
Please register by Friday, February 12. Space is limited to the first 50 individuals to register.
Please note: this event is limited to people within the bleeding disorders community living in the New York City tri state area.
Register Here

Event Sponsor
This event is generously supported by BDRN

vWD Community Chat
2021-02-24 13:00 - 14:00
On Wednesday, February 24 at 1 PM, we are hosting our next virtual chat for community members with vWD.
Join us as we come together as a community to share our experiences and connect with others.
Join The Chat Here

Moms and Women Community Chat
2021-02-18 18:00 - 19:00
On Thursday, February 18 at 6 PM, we are hosting our next virtual chat for moms and women with a bleeding disorder.
Join us as we come together as a community to share our experiences and connect with others.
Join The Chat Here

Virtual Couples Retreat
2021-02-11 18:00 - 20:00
Join us for our first-ever Virtual Couples Retreat on Thursday, February 11 at 6 PM!
To kick off the event, Family and Marriage Therapist Dave Robinson, PhD, will be facilitating a session focused on taking your relationship with your partner or spouse off the back burner. Couples will then put your knowledge of your loved one to the test in our custom version of the Newlyweds Game. The top ranking team will win a prize, just in time for Valentines Day.
All couples in the bleeding disorders community are welcome to attend: whether you’re young or old, married or not—if you’re in a partnership, you can sign up!
Please note: this event is limited to couples that are at least 18 years old and are living in the New York City tri state area.
Register Here

Cocinando en Familia
2021-02-09 18:00 - 20:00
***Tenemos que posponer el evento de cocina de este 2 de febrero del 2021 debido a que nos cancelaron las entregas de los ingredientes por la tormenta de nieve.
La nueva fecha es el martes 9 de febrero a las 6pm.***
El Chapter de la Hemofilia de NY (NYCHC) te invita a participar a nuestro próximo evento “Cocinando en Familia” este martes 9 de Febrero del 2021 de 6PM a 8PM dirigido para la comunidad latina (en español).
Te pedimos que te registres aquí para que te enviemos la receta, el enlace del zoom y los ingredientes.
No hay mejor forma de celebrar con la comunidad que alrededor de la mesa. No se pueden perder este evento y ahí nos vemos.
Este evento está dirigido a familias con un desorden de coagulación y viviendo en el área tri estatal. Registrate antes del 3 de Febrero para que puedas recibir los ingredientes.
Registrarse Aquí
