This past March, advocates from across the country joined the National Hemophilia Foundation for its annual Washington Days.  While there, we urged lawmakers to:

• Maintain CDC (Center for Disease Control) funding for data collection at all 135 Hemophilia Treatment Centers

Without this funding, the amount of data collected will be dramatically reduced. This will compromise the program's effectiveness in monitoring the safety of the blood supply, improving treatment and prevention strategies, and ensuring access to specialized care.

• Support HR1919, the Bleeding Disorders Screening, Awareness and Further Education (SAFE) Act

This bill would increase the screening and diagnosis of bleeding disorders in adolescents. By ensuring early identification of this condition, people can start effective treatment sooner.

 

• Fully implement the Affordable Care Act

We have already seen the benefits of this Act in dependent care coverage until age 26, the elimination of lifetime caps, and no denial of coverage due to pre-existing conditions.   For more information on the implementation of the Affordable Care Act, go to the "Healthcare Reform" section on our Advocacy pages.

 

 Who are my Congressman/woman and U.S. Senators?

• Click HERE and enter your address.

Where can I go to learn more about what’s happening on a national level?

• Click HERE to visit the National Hemophilia Foundation (NHF) website on Advocacy.

• Click HERE to visit the Hemophilia Federation of America (HFA) website on Advocacy.

How can I get involved?

• To receive the latest legislative updates, sign up to be a part of our Advocacy Alert Network and sign up to receive legislative alerts from the HFA.

For more information, contact Laura Salomons at lsalomons@newenglandhemophilia.org.

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