Tell Your Story: NHF's Washington Days Announced for March 7-9, 2012

Washington Days, NHF’s annual grassroots advocacy day on Capitol Hill, will take place from Wednesday, March 7 until Friday, March 9th, 2012. This is your opportunity to learn about key legislative issues affecting the bleeding disorders community. More importantly, it’s a chance for you to tell your own story to our elected representatives and their staff members, helping them understand your genuine needs and concerns. Past Washington Days participants have described it as an empowering experience they will never forget. It's important that we send a strong group from across the New York City area to make sure our voice is heard!

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HHS Issues Bulletin on State Implementation of Healthcare Reform

On December 16, 2011 the Department of Health and Human Services (HHS) released a bulletin outlining proposed policies on how states will implement aspects of healthcare reform, also known as the Affordable Care Act.  This important Federal legislation is designed to ensure that all Americans will have access to quality, affordable health insurance. Some provisions of the legislation have already taken effect and the rest are scheduled to be in place by 2014. The new bulletin addresses the issue of what states will need to do to ensure that insurance plans that will be offered to consumers and small business will cover “essential health benefits.” HHS had already established a list of broad essential benefit categories which include prescription drugs, physician services, emergency services, mental health services, chronic disease management and a number of others.

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Major Advance in Gene Therapy for Hemophilia B

As reported by the New York Times on December 10^th and by a wide variety of other media outlets, medical researchers in Britain have successfully used gene therapy to treat six individuals with Factor IX deficiency also known as hemophilia B. The results represent a major advance not only in the treatment of hemophilia but also in the field of gene therapy which has experienced many setbacks and false starts over the last twenty years.

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NYCHC Annual Meeting a Huge Success

Nearly 300 members of the local bleeding disorders community came together on December 4^th for a day of laughter, learning and lunch at the New York City Hemophilia Chapter 2011 Annual Meeting. It was our highest attendance at any Chapter program outside of the New York City Hemophilia Walk. The event, which was held at the Downtown Marriott Hotel, featured a variety of educational and fun sessions for adults and children. The main session featured a Chapter Update by NYCHC President and Founder Melissa Penn. Penn talked about all of growth the Chapter had experienced in the last year as well as some of the plans underway for the future. The update was followed by a panel discussion entitled “Factor Today and Tomorrow” with participation by representatives of six of the clotting factor manufacturers.

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