NYC Hemophilia Chapter

15th Anniversary Unite Walk
2020-10-10 10:00 - 13:00 UTC

vWD Community Chat
2020-09-30 13:00 - 14:00
On Wednesday, September 30 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

Dealing With Male Role Expectations
2020-09-22 13:00 - 14:00
On Tuesday, September 22, at 1 PM, in place of our weekly discussion for men with a bleeding disorder, we will host a discussion with HFA, titled: “But I Can’t Bring Home the Bacon! Coping with Male Role Expectations.”
Society places great pressure on men to be the head of the household and primary ‘breadwinner,’ for their families. This session will discuss ways adult men with bleeding disorders can cope with male role expectations and find valuable ways they can still contribute and support their households, families, and relationships.
Join The Discussion Here

Advanced Stress Session
2020-09-17 19:00 - 20:00
On Thursday, September 17 at 7 PM, we are joining with the Hemophilia Federation of America (HFA) to host a virtual discussion focused on understanding stress, anxiety, and depression, especially in light on COVID-19.
This discussion will be centered largely around the impact of COVID-19, and the challenges and stress caused by the transition back to school this year. This will help you learn coping strategies to better manage and deal with stress.
Register Here

Back To School (Regreso A Clases)
2020-08-30 10:00 - 13:00
On Sunday, August 30, we will host our Annual Bilingual Back to School Event. This virtual event was designed to help your family transition out of summer and get ready to return to school.
This year, we will pay special attention to helping parents navigate the changing roles and expectations for school through a pandemic.

Here is an overview of the types of programs that will be offered:

A guide for parents about school this fall
Coping with stress of the unknown
English and Spanish sessions on how to set up a 504 Plan (disability accommodation plan) or IEP (Individualized Education Plan) for your child.
Opportunities to talk to HTC nurses
Activities for kids and teens
Register for a bilingual book trade

In order to help you prepare to go back to school, we are excited to raffle off one free laptop computer to a community member who attends this event!
Register Here
El domingo 30 de agosto, 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.
Este año, tendremos sesiones especiales en los roles y expectativas durante una pandemia que tendrán los padres en este inicio de clases.

A continuación encontrarás una descripción general de los tipos de programas que se ofrecerán:

Una guía para padres sobre la escuela este otoño
Cómo manejar el estrés en estos días ante lo desconocido
Sesiones en inglés y español sobre cómo establecer un Plan 504 (plan de adaptación) o IEP (Plan de Educación Individualizado) para tu hijo(a).
Sesiones con enfermeras de los Centros de Tratamiento de Hemofilia (HTC)
Actividades para niños y adolescentes
Regístrate para un intercambio de libros en ambos idiomas

Queremos ayudar en este regreso a clases y estamos muy entusiasmados porque rifaremos una laptop (computadora portátil) a un miembro de la comunidad que asista a este evento y esperamos que seas tu!
Registrate Aquí

English Sessions for Adults

10 AM: Balancing Emotional Wellness, Sponsored by Pfizer bit.ly/Meet1-NYCHC
10 AM: I Can Do It Myself – Tips to Improve your Infusing Skills, Sponsored by BDRN bit.ly/ZoomA-NYCHC
11 AM: Panel Discussion: Is It Safe? Answers from doctors and school administrators about going back to school bit.ly/ZoomA-NYCHC
12 PM: Managing the Unknown- Mental health resources bit.ly/ZoomA-NYCHC
12 PM: Staying Fit During a Pandemic bit.ly/Meet1-NYCHC
1 PM: Laptop Raffle, Social Connections, and Meet our Local Teen Impact Award Winners bit.ly/ZoomA-NYCHC

En Español

10 AM: Cómo establecer expectativas educativas, Sponsored by Sanofi Genzyme bit.ly/ZoomB-NYCHC
11 AM: Aumento de la resiliencia en los niños, Sponsored by Octapharma bit.ly/ZoomB-NYCHC
12 PM: Gestionar lo desconocido: recursos de salud mental bit.ly/ZoomB-NYCHC
1 PM: Rifa de computadoras portátiles, conexiones sociales y conozca a nuestros ganadores del premio Local Teen Impact bit.ly/ZoomA-NYCHC

Kids

10 AM: I Can Do It Myself – Tips to Improve your Infusing Skills, Sponsored by BDRN bit.ly/ZoomA-NYCHC
11 AM: Master Builders Lego Building Club bit.ly/Meet2-NYCHC
12 PM: Imagineering – Design Your Own Amusement Park bit.ly/Meet2-NYCHC
1 PM: Laptop Raffle, Social Connections, and Meet our Local Teen Impact Award Winners bit.ly/ZoomA-NYCHC

Teens

10 AM: Balancing Emotional Wellness, Sponsored by Pfizer bit.ly/Meet1-NYCHC
10 AM: I Can Do It Myself – Tips to Improve your Infusing Skills, Sponsored by BDRN bit.ly/ZoomA-NYCHC
11 AM: How to land a job as a video game designer bit.ly/Meet3-NYCHC
12 PM: Let’s Debate – Pick a Side bit.ly/Meet3-NYCHC
1 PM: Laptop Raffle, Social Connections, and Meet our Local Teen Impact Award Winners bit.ly/ZoomA-NYCHC

Platinum Sponsor

Platinum Sponsor

Platinum Sponsor

Platinum Sponsor

Silver Sponsor

Silver Sponsor

Silver Sponsor

vWD Community Chat
2020-08-26 13:00 - 14:00
On Wednesday, August 26 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

HFA Annual Symposium (Virtual)
2020-08-24 - 2020-08-29

Mom's and Women Chat
2020-08-20 13:00 - 14:00
On Thursday, August 20 at 1 PM, we are hosting our next virtual chat for mom’s and women!
Join us as we come together as a community to share our experiences and connect with others. At 1 PM, join the chat by going to bit.ly/NYCHCLunch

En Español Virtual Chat
2020-08-10 13:00 - 14:00
On Monday, August 10 at 1 PM, we are hosting our next virtual chat in Spanish! Join us as we come together as a community to share our experiences and connect with others.
Join The Chat Here

Dad's in Action Community Chat
2020-08-07 17:00 - 18:00
On Friday, August 7 at 5 PM, we are hosting our next virtual chat for Dad’s in Action. Join us as we come together as a community to share our experiences and connect with others.
Join The Chat Here

NHF Bleeding Disorders Conference (Virtual)
2020-08-01 - 2020-08-08

vWD Community Chat
2020-07-29 13:00 - 14:00
On Wednesday, July 29 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

In The Know: Treatment Decision Making Summit (Virtual)
2020-07-26

JeoPARODY
2020-07-23 19:00 - 20:00
On Thursday, July 23 at 7 PM, NYCHC will be taking part in the Great Northeast Jeoparody Challenge!
Here, BioMatrix, CSL Behring, and the Executive Directors of 7 Northeastern bleeding disorders chapters will go head-to-head in a bleeding disorders’ Jeoparody challenge.
During some of the gameplay, community members can participate by throwing their knowledge at a struggling Director. There will be banter, jests, and the expected Executive Director bravado. There will be education, right answers, wrong answers, and “Hey! I didn’t know that!” moments.

Register Here

Participating chapters include: The New England Hemophilia Association, The Hemophilia Alliance of Maine, the Connecticut Hemophilia Society, the New York City Hemophilia Chapter, the Hemophilia Alliance of New York, the Bleeding Disorders Association of Northeastern New York, and the Hemophilia Alliance of New Jersey.

Moms and Women Chat
2020-07-23 18:00 - 19:00
On Thursday, July 23 at 6 PM, we are hosting our next community 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 Albany Day
2020-07-21
Virtual Albany Day
The New York State legislature is reopening for just a few days and we need your help advocating at our Virtual Albany Day! Join us on Tuesday, July 21 for our Virtual Albany Day as advocates from all over New York State mobilize and advocate in support of the Prior Authorization bill.
Participating takes 15 minutes by doing the following tasks on July 21:

Email your legislators through our automatic, easy-to-use form
Post on Facebook and Twitter and tag your legislators using our templates
Register to receive an “Advocacy Package” in the mail
Live advocacy help via Zoom from 11 AM – 3 PM

Register below or follow our social media pages for more information! If you have any questions, please contact Lindsay Cox at lindsay.cox@nyhemophilia.org.
Register Here

Game Night
2020-07-10 19:00 - 20:00, 2020-07-03 19:00 - 20:00, 2020-06-26 19:00 - 20:00

Advocacy Webinar: The Other Side of the Desk
2020-06-26 10:00 - 11:00
Webinar – Advocacy: The Other Side of the Desk
The New York State Bleeding Disorders Coalition is holding a Webinar on Friday, June 26 at 10 AM. This will be a conversation with elected officials in the bleeding disorders community about advocacy from both sides of the table. Speakers include:

Randi Clites represents Ohio’s 75th House District. She began her advocacy work after her son was diagnosed with a rare bleeding disorder, then went on to serve as the Associate Director of the Northern Ohio Hemophilia Foundation and the Advocacy Coordinator for the Ohio Bleeding Disorders Council.
Vaughn Ripley has hemophilia and currently serves on the Brunswick City Council in Maryland. Vaughn previously served as Advocacy Chair on the Hemophilia Foundation of Maryland’s Board of Directors.
Jeremy Griffin is the Executive Director of the New York City Hemophilia Chapter and has been a tireless advocate for our community. Jeremy also serves on the Oradell School Board in New Jersey.

Register Here

Game Night
2020-06-19 19:00 - 20:00
We’re here to help you have some fun during this stressful time! We’re hosting a Game Night every Friday night at 7 PM!
Join us this Friday at 7 PM for a night full of laughs, connections, and fun.

Join Us Here

Movie Night
2020-05-07 19:00 - 21:00
The New York City Hemophilia Chapter (NYCHC) invites you to join us for a Movie Night from the comfort of your home! Join us as we watch The Incredibles 2 on Thursday, May 7 at 7 PM to kick off our Movie Night series!
Learn More and Register Here

Virtual Expo
2020-05-02 13:00 - 15:00 | PA, United States
The New York City Hemophilia Chapter is thrilled to invite you to our Virtual Expo event on Saturday, May 2.
Seeing that in-person events are currently paused due to the Coronavirus (COVID-19) public health emergency, we are hosting this event to help our community members feel connected while getting educated–all through our virtual platform!
We will start the day with a group session for the entire community, then participants will break up to attend virtual breakout sessions. A complete agenda and list of breakout sessions will be released soon!
Our goal is to give you the information you need to enhance your education of bleeding disorders from both medical and practical management standpoints, as well as making sure you get the opportunity to develop deep personal relationships with one another.
More information will be released soon!
Sign Up Here

Virtual Coffee Cafe
2020-04-02 09:30 - 10:30
On Thursday, April 2 at 9:30 AM ET we are teaming up with the New England Hemophilia Association (NEHA) to host a Virtual Coffee Cafe for Moms and Women with a bleeding disorder!
These Virtual Coffee Chats allow our community members to stay connected during this public health emergency, while also meeting others from the bleeding disorders community in other areas.
The discussion will be led by Allison Harrison, MSW, a social worker with the Hemophilia Federation of America (HFA).
Register Here

Christopher’s Hemophilia Benefit
2020-03-27 19:00 - 2020-03-28 00:30 | The Coral House, 70 Milburn Avenue, Baldwin, New York, 11510
Christopher’s Hemophilia Benefit is taking place on Friday, March 27, 2020 at 7 PM at The Coral House, located 70 Milburn Ave, Baldwin NY 11510.
This incredible event will feature an open bar, hors d’oeuvres, and a sit down dinner. All funds raised at this event will go toward Christopher’s Walk Team: Christopher’s Crew!

What's Your Story?
2020-03-24 18:00 - 20:00 | WeWork Penn Station, 315 West 36th Street, 9th Floor, Room 9A, New York, NY, 10018, United States
In our community, every patient has a different story. Whether you have hemophilia, vWD, or any other type of bleeding disorder, this has likely caused some major headaches in your life. But, as we’ve seen repeatedly, it can also allow our community members to flourish, make new connections, and do things they never thought would be possible.
On Tuesday, March 24 from 6 PM – 8 PM, we invite you to hear stories from community members just like you. Multiple speakers will take a few minutes to share their stories: each with their own unique perspective on how their bleeding disorder has affected their lives. Stories will be composed of difficulties directly related to living with or caring for someone with a bleeding disorder, as well as the lessons learned from these experiences.
This is the perfect time to connect based on shared experiences, lend support to other community members based on your own story, and to learn about others within our community.
This event will take place on Tuesday, March 24 from 6 PM – 8 PM at WeWork Penn Station, on the 9th Floor in Room 9A, located at 315 West 36th St, New York, NY 10018.
Refreshments will be served. This event is intended for community members ages 13 and older.

Register Here

Albany Days
2020-03-15 14:00 - 2020-03-16 16:00 | Renaissance Albany Hotel, 144 State Street, Albany, NY, 12207, United States
*** This event has been postponed due to the Coronavirus (COVID-19) ***
Read our statement about the postponement here.
Please check back soon for an update.

Coalition Chapters unite in Albany annually to advocate for the needs of the bleeding disorders community. Individuals and families are encouraged to participate in this legislative day.
During a pre-meeting, 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. Throughout the event, families learn more about the legislative process and meet other families navigating through the same health care issues. If time permits, attendees may also have an opportunity for a guided tour of the Capital.
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 day 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.
***If you register for the READY Program or the Advocacy Skills & Knowledge Training Program, you do not need to additionally register for Albany Days.***
Registration closes on Friday, February 21st, 2020.
If you have any questions, please contact Lindsay Cox, the New York State Bleeding Disorders Coalition’s Coalition Manager, at lindsay.cox@nyhemophilia.org.
Sign up for Albany Days Here

Advocacy Skills & Knowledge (ASK) Training
2020-03-14 17:30 - 2020-03-16 17:30 | Renaissance Albany Hotel, 144 State Street, Albany, NY, 12207, United States
*** This event has been postponed due to the Coronavirus (COVID-19) ***
Read our statement about the postponement here.
Please check back soon for an update.

For the first time, the New York State Bleeding Disorders Coalition is offering an Advocacy Skills & Knowledge Training Program open to adults from all over New York State with three years of advocacy experience or less. You will receive a special introductory training on the ins-and-outs of advocacy, a comprehensive review of the issues, preparing your elevator pitch, effective story-telling, and the legislative process.
You will then have the opportunity to utilize your advocacy skills when we go to the Capital as a part of Albany Days on March 16th.
Coalition Chapters unite in Albany annually to advocate for the needs of the bleeding disorders community. Individuals and families are encouraged to participate in this legislative day.
During a pre-meeting, 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. Throughout the event, families learn more about the legislative process, and meet other families navigating through the same health care issues.
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 day 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.
***If you register for the Advocacy Skills & Knowledge Training Program, you do not need to additionally register for Albany Days.***
Registration closes on Friday, February 21st, 2020.
If you have any questions, please contact Lindsay Cox, the New York State Bleeding Disorders Coalition’s Coalition Manager, at lindsay.cox@nyhemophilia.org.
Sign Up Here

READY Teen Retreat
2020-03-14 11:30 - 2020-03-16 16:00 | Renaissance Albany Hotel, 144 State Street, Albany, NY, 12207, United States
*** This event has been postponed due to the Coronavirus (COVID-19) ***
Read our statement about the postponement here.
Please check back soon for an update.

The 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.
Learn about how legislation is passed, how to tell your story, and have the opportunity to utilize your advocacy skills when we go to the Capital on March 16th. 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. Minors must be accompanied by at least one guardian.
***If you register for the READY Program, you do not need to additionally register for Albany Days.***
Registration closes on Friday, February 21st, 2020.
If you have any questions, please contact Lindsay Cox, the New York State Bleeding Disorders Coalition’s Coalition Manager, at lindsay.cox@nyhemophilia.org.
Sign Up Here

Washington Days
2020-02-26 - 2020-02-28
The National Hemophilia Foundation (NHF) is once again hosting Washington Days from February 26 to February 28, 2020! This event is an excellent opportunity for you to advocate on important issues on a national and local level, learn how the legislative process works, and meet other community members from across the country.
Learn more about Washington Days here.

Advocacy Captains do not need to complete this form. They should contact Lindsay Cox regarding Washington Days at lindsay.cox@nyhemophilia.org.
