Albany Days March 17-19, 2018

READY Teen Program:

Saturday, March 17- Monday March 19

In preparation for Advocacy Day on March 19th, the READY program (Regional Education Advocacy Development for Youth) provides teens in the community with extra preparation in advocacy and leadership. This is a great event for Teens who want to develop effective advocacy skill and learn more about the issues that need to be addressed when presenting to our legislators. This will also be held at the Renaissance Albany Hotel.

· If your child is interested or if you know of anyone between the ages of 13 - 18 affected by a bleeding disorder who will suit this program please forward the link below or have their parent/guardian contact HANY directly., 212-682-5510

· At least 1 parent or guardian required for anyone under 18

· Hotel and travel will be covered. Renaissance Albany Hotel. 133 State Street Albany, NY 12207

· To register or for more details -


Advocacy Day:

Monday, March 19, 7:30am



NHLBI/DBDR FVIII Inhibitor State of the Science Workshop

Researchers will be discussing ways to solicit the hemophilia community into the development of a coordinated US- based blueprint for future basic, translation and clinical research focused on FVIII immunogenicity and FVIII inhibitor prevention/eradication.


May 15, 2018


NIH Natcher Conference Center

 Bethesda, MD

If you are interested in attending contact 


S A I L Self Advocacy Independence & Leadership Training


For children of the bleeding disorders community ages 13-18 and accompanying parent / guardian
Date: September 14-16, 2018
Venue: Camp Quinipet, Shelter Island, NY
The focus of this training is on:
Self Advocacy – “Who am I?” “What is my story?” “How can I best express my issues and needs?”
Independence – As teens move from childhood to early adulthood they would benefit from enhancing their skill sets required for independence. Preparing for college, work, internships, managing finances, managing their health.
Leadership – Specific exercises in leadership will build confidence and better decision making for this cohort.
For more information or to register:
Contact Tyshawn Constantine: 212-682-5510


Image result for hfa logo
The Hemophilia Federation of America Young Adult Program Is Booming! By offering additional resources and education about the benefits of self-care and exercise for young adults. Select link for more information:








"Patient Puppet"

We donated "Patient Puppets" to the Hemophilia Treatment Center in Long Island Jewish Medical Center. The patient puppet, has a port, a PIC line, a bruise site, and a Hemophiliac knee joint, to educate and demonstrate to kids about Hemophilia.




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