NYC Hemophilia Chapter

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 UTC

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.

Walk Kick-Off Party
2020-02-23 12:00 - 14:00 | The Chelsea Bell, 316 8th Ave, New York, NY, 10001, United States
The New York City Hemophilia Chapter invites you to our Unite for Bleeding Disorders Walk Kick-Off Party.
Join Us for an afternoon of food, friends, and fun as we prepare for our 15th Annual Unite for Bleeding Disorders Walk taking place on Sunday, February 23 from 12 PM – 2 PM. Our kick-off party will take place at The Chelsea Bell, located at 316 8th Ave, New York, NY 10001.
This event is intended for families and individuals who are organizing teams for the New York City Hemophilia Walk happening on June 7 in Riverside Park. Our sponsors are also invited to attend this event in addition to anyone who is interested in launching their own team.
This event is free for all to attend, and lunch will be provided. We hope you can attend to help us kick off our 15th Anniversary Walk!
Ready to start fundraising now? The Walk web page is now live!
Click Here to Set Up Your Team and Personal Pages
Attend the Kick-Off Party

Fitness Challenge Launch
2020-01-15
Thank you for your interest in participating in the New York City Hemophilia Chapter’s (NYCHC) & New England Hemophilia Association (NEHA) 100 Day Fitness Challenge!
Please note: Applicants must be 18+ and have a diagnosed bleeding disorder (carriers are also eligible to apply). Unaffected parents, siblings or other family members are not eligible to participate. Preference will be given to those who have not participated in this challenge before.
Please complete the questions below to apply for the Fitness Challenge. Applications are due by 5pm on Friday, December 20. You will hear by Monday, December 23 if you are accepted into the program. Thank you in advance for your interest.
Click Here to Apply

2018 Education Day
2018-11-18 09:00 - 17:00
Tis the season for learning and festivities with NYCHC! Join us at the 2018 Education Day and Holiday Party!

Featuring:
Adult Sessions in English and Spanish on:
++ advocacy and healthcare updates
++ pain management
++ women with bleeding disorders
++ inhibitors
++ aging with a bleeding disorder
++ clinical trials and new treatments
Teen Sessions
Childcare and Sessions for Kids
Surprise Guest Speakers
++ AND MORE ++
!!!PLUS!!!
Wellness Lounge featuring: yoga, meditation, massage, aromatherapy, and more
Check back for more details and location information.

2018 Gala
2018-11-17 17:00 - 22:00
The 2018 Gala is an experience not to be missed!
Join us for a night of drinks, dancing, and doing good! Every year we celebrate the amazing work that New York City Hemophilia Chapter does, and honor two community members who’ve dedicated their time and efforts to the bleeding disorders community.

Check back for details on location, honorees, and how to purchase tickets.

Latino Retreat
2018-10-19 18:00 - 2018-10-20 15:30 | Hilton Westchester, 699 Westchester Avenue, Rye Brook, NY
¡NYCHC presenta su primer Retiro Latino!

Este retiro familiar es para familias latinas / hispánicas y de habla hispana en la comunidad de trastornos hemorrágicos. Este retiro presentará la oportunidad de:

Conoce a otras familias en la comunidad
Aprenda a infundir (padres e hijos)
Discuta sobre planificación familiar, nutrición y seguro con expertos en el campo
Aprenda a abogar por usted y su familia en la sala de emergencias y más allá
¡y más!

Este retiro es completamente gratis para las familias participantes.
Vuelve pronto para obtener más información y detalles.

NYCHC presents its first Latino Retreat!

This retreat is for Latino or Hispanic families, and Spanish-speaking families in the bleeding disorders community. This retreat will present the opportunity to:

Get to know other families in the community
Learn to infuse (parents and children)
Discuss family planning, nutrition, and insurance with experts in the field
Learn to advocate for yourself and your family in the ER and beyond
and more!

This retreat is completely FREE for participating families.
Check back for more information and details.

HHM: Fiesta Spook-tacular!
2018-10-07 15:00 - 18:00

vWD Scavenger Hunt
2018-09-30 09:30 - 12:00
Stay tuned for more details about this event.

Manhattan Legislator Breakfast
2018-09-29 11:00 - 13:00 | 108 West 39th, 9th Floor, Suite 903, New York, NY 10018
The New York City Hemophilia Chapter invites you to join us at our Manhattan Legislator/Community Breakfast, the first in a series of opportunities to directly connect with legislators from your area. This breakfast will be centered around the topic of pre-existing conditions. Come share your story, partake in a discussion about changes in health care policy, and network with your legislators! This is a free, all ages event.
In attendance will be Congresswoman Carolyn Maloney, State Senator Brad Hoylman, and Assemblymember Harvey Epstein, among other Manhattan legislators.
Refreshments will be provided. Please direct any questions to Lindsay Cox at lindsay.cox@nyhemophilia.org.
Register here: https://www.eventbrite.com/e/manhattan-legislator-breakfast-tickets-49706107305

2018 TORCH Retreat
2018-09-21 08:00 - 2018-09-23 17:00
TORCH Retreat is Back!

After the success of our first teen retreat, TORCH is back to welcome old and new friends for a full weekend of fun, learning, and community!
The TORCH Retreat will be held September 21-23, 2018. Staff includes NYCHC staff, a nurse, young adult mentors, and chaperones in addition to onsite staff.
Featuring:

Canoeing
Hiking
Team Building and Leadership Skills
Ropes Course
Mentorship
Friendship
and more!

This retreat is open to all teens ages 13-17 within the Greater NYC bleeding disorders community. It is open to siblings and affected teens. This program is absolutely F R E E, however, spaces are limited.
Check back for more information and location details!

2018 Bilingual Back to School Event
2018-09-09 11:00 - 16:00
Es tiempo para la escuela, una vez más! ¡Únete a NYCHC mientras nos preparamos para el próximo año escolar!
con:

Oportunidades para aprender sobre planes 504 e IEP
Sesiones para la transición de adolescentes y niños
Una oportunidad de hablar con el personal de HTC y las enfermeras de la escuela
Una oportunidad para aprender y practicar infusión
¡y más!

Vuelve para más detalles e información de ubicación.

It’s time for school once again! Join NYCHC as we prepare for the coming school year!
Featuring:

Opportunities to learn about 504 Plans and IEPs
Sessions for transitioning teens and kids
A chance to talk with HTC staff and school nurses
An opportunity to learn and practice infusion
and more!

Check back for more details and location information.

Women's Retreat
2018-08-24 18:00 - 2018-08-25 15:00
NYCHC is expanding our programming to serve the needs of women and girls with bleeding disorders. This Spring, NYCHC will host it’s first retreat dedicated to women and girls and their specific needs.
This retreat will present the opportunity to:

Participate in peer-to-peer mentoring
Gain insights with medical expertise from obstetricians and gynecologists familiar with bleeding disorders
Engage in programming made specifically for teen girls
Share thoughts, experiences and ideas for strengthening this community
and more!

Stay tuned for more information about this sure-to-be awesome event!

NYCHC Kids Day Camp
2018-08-13 08:00 - 2018-08-17 15:00 | Astoria Sports Complex, 34-38 38th St, Long Island City, NY, 11101, United States
From Monday, August 13 – Friday, August 17, 2018, kids ages 6-11 will be able to swim, play soccer, make arts and crafts, take local day trips, and more. PLUS, we’ll have infusion sessions as well as bleeding disorder-related games and educational sessions. Each camper recieves a camp t-shirt!
Camp Starts: 8:00am
Pick-up: 2:45pm-3:00pm
Late Pick-up: Please speak with Jeremy regarding arragements for pick-up after 3:00pm.
This is a F R E E camp, however, advanced registration is required, and slots are limited to 20 kids.
This event is open to kids ages 6-11 only.
Please register by Friday, August 3, 2018 in order to attend.
Please contact Jeremy at jeremy.griffin@nyhemophilia.org or at (571) 268-1443 for any questions or concerns.

¡NYCHC está organizando nuestro primer Campamento de Día de Niños!
¡NYCHC está organizando un Campamento de Día para Niños de una semana en asociación con el Complejo Deportivo Astoria!

Desde el lunes 13 de agosto hasta el viernes 17 de agosto de 2018, los niños de 6 a 11 años podrán nadar, jugar fútbol, hacer manualidades, excursiones locales y más. ADEMÁS, tendremos sesiones de infusión así como juegos relacionados con trastornos hemorrágicos y sesiones educativas. ¡Cada campista recibe una camiseta del campamento!
El campamento comienza: 8:00 a.m.
Recogida: 2:45 p.m.-3: 00 p.m.
Recogida tarde: hable con Jeremy sobre los arreglos para recoger después de las 3:00 p.m.
Este es un campamento L I B R E, sin embargo, se requiere inscripción avanzada, y este es un campamento L I B R E, sin embargo, se requiere inscripción avanzada y el espacio está limitado a 20 niños. Este evento está abierto solo para niños de 6 a 11 años.
Regístrese antes del viernes 3 de agosto de 2018 para asistir.
Por favor, póngase en contacto con Jeremy en jeremy.griffin@nyhemophilia.org o al (571) 268-1443 si tiene alguna pregunta o inquietud.

NYCHC x Luna Park: Vol 2
2018-07-20 15:30 - 22:00 | Luna Park, 1000 Surf Avenue, Brooklyn, New York, 11224
NYCHC is returning to Luna Park this summer!

Join us for a fun-filled day in Coney Island’s very own, Luna Park. First, teens will spend the afternoon completing challenges and exploring rides. Later in the evening, families are invited to watch the fireworks display with the Chapter. Meet us by the Carousel to get a good view!

2018 Inhibitor Retreat
2018-06-29 18:00 - 2018-06-30 15:00
Following the success of the 2017 Inhibitor Retreat, NYCHC once again presents this awesome opportunity for families and patients who struggle with inhibitors. The 2018 Inhibitor Retreat will feature opportunities to:

Access and discuss case studies of patients with inhibitors
Participate in peer-to-peer mentoring
Gain insights and medical expertise
Learn strategies for dealing with the day to day challenges of living with inhibitors
Engage in meaningful activities and programming for kids
Share thoughts, experiences and ideas for strengthening this community

This retreat will once again be free to participants who attend.
Stay tuned for more details about the retreat.

NYC Unite for Bleeding Disorders Walk
2018-06-03 | Riverside Park, 6681 Riverside Dr, New York, New York, 10025
In 2006, a handful of New York families and friends affected by bleeding disorders went to Riverside Park and started the first Hemophilia Walk.
We realized that by standing together we could make a difference for ourselves and our children. There was excitement in the air that first beautiful day, and the promise of a better tomorrow. Many of you were there with us, and many more joined in the years that followed.
The 2016 Walk teams raised over $313,616.00. The 2017 Walk raised over $401,000!
This year, under the new brand, Unite for Bleeding Disorders, the NYC Walk will be its biggest and best year yet! The 2018 Walk will once again be held in Riverside Park (enter at 103rd Street).
Register your Walk team today!
