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January 2017 Edition
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In this Issue

NYCHC Needs You!: Call for Volunteers

Industry News:

 
 

NYCHC Needs YOU!: Call for Volunteers
New York City Hemophilia Chapter runs on the power of volunteers. And we want to keep this running through 2017! Do you have a story to share in the Bleeding Times? Want to start a women and carriers group? Interested in planning more events for teens? Become a volunteer TODAY!
Click Here to Volunteer with NYCHC
Industry News

FDA Clears Hemophilia A Gene Therapy, SB-525, for Testing in Patients

Sangamo Therapeutics‘ gene therapy program to potentially treat hemophilia A, called SB-525, has been cleared by the U.S. Food and Drug Administration (FDA) for clinical testing in adult patients.

The company announced that the FDA approved its Investigational New Drug (IND) application for SB-525, a necessary first step in conducting clinical trials.

(Read More)

FDA Will Review LFB's Application for Recombinant Factor VIIa Therapy



Multinational biopharmaceutical company LFB S.A. recently announced that the US Food and Drug Administration (FDA) has accepted for review the Biologic License Application (BLA) of the company’s recombinant factor VIIa product. A BLA is a request to the FDA for permission to introduce, or deliver for introduction, a biologic product into interstate commerce. The product, known as Eptacog Beta, was developed for the treatment of congenital hemophilia A or B and inhibitors in adolescents and adults.

(Read More)
Upcoming Chapter Events
Latino Outreach: Salidita de las Mamás









 
Domingo 29 de enero 2017
12-4pm
Bronx Museum of the Arts, 1040 Grand Concourse
 
¡NYCHC presenta un día de relajación! Hablaremos de cómo nosotras como mujeres experimentamos el estrés. Compartiremos una comida juntas. ¡Vamos a pintar y hacer nuevas amigas y divertirse! 

Este es un evento gratuito. El sábado, 22 de enero es el último día para registrarse.  Registrarse aquí
 

New York City Hemophilia Chapter's 2nd Annual VWD Retreat










 

Residence Inn Marriott Times Square

 Friday, February 24, 2017 
5:30pm- Hotel Check-In
7:00pm- Cocktail Reception 

Saturday, February 25, 2017
8:00am-3:30pm - Workshops 

 

The program will feature opportunities to:
- Meet other community members affected by VWD
- Participate in discussions with local treatment center clinicians and other experts
- Learn strategies for dealing with the day to day challenges of living with VWD
- Share thoughts, experiences and ideas for strengthening this community

Community Events

HANY & Octapharma
Present: Silly Science

Incorporate some fun & simple hands on engineering with wind up toy robots and their systems. Our goal is for community members to have a deeper understanding of all of the "systems" that support them and their bleeding disorder. **Intended for ages 8-14 with their parents**


Saturday, January 28, 2017
12:00-3:00pm

Long Island Jewish Medical Center Northwell Health
To register email Gabriela Blum by January 25, 2017.

 

 

Register Now for HFA Symposium in Providence!
 

 

HFA's Annual Symposium is a community-centered educational event that draws hundreds of members from the bleeding disorders community together to share information, learn new advancements, and build a network of support! Each year, HFA offers travel scholarships to first time attendees who need financial assistance. We sincerely look forward to seeing you in Providence, Rhode Island this April to help us show the world that “Hope Ignites!”

April 6-9, 2017
Rhode Island Convention Center

For more infomation and to register, Click Here.

 

Registration Open for Type 3 VWD Conference

"This is the first meeting designed to inform Type 3 VWD patients about their disease. A milestone."

Christopher Walsh, MD, PhD, Associate Professor and Director of the Hemophilia Program in the Division of Hematology and Medical Oncology at Mount Sinai School of Medicine, NY.
 

Global Blood Disorder Foundation is excited to introduce the first National Type 3 Von Willebrand Disease Conference, "Making the Connection" in Palm Beach Gardens, Florida from May 12 – 15, 2017.

For more information and to register, Click Here.

Applications Open for Travel Grants to NHF's Annual Meeting in Chicago

The National Hemophilia Foundation (NHF) is pleased to offer Connections for Learning Grants for those who want to attend its 69th Annual Meeting in Chicago, IL, August 24-26, 2017.

NHF’s Annual Meeting enables the bleeding disorders community to come together and exchange information on a wide variety of topics, from the basics of hemophilia and von Willebrand disease to the latest research breakthroughs and new drug therapies. Further, the three-day conference provides the premier opportunity for networking and support for individuals and families affected by bleeding disorders.

For more information and to apply, Click Here.

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