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Women’s Bleeding Disorders Advocate Dies at 49
 

Renee Paper, RN, CCRN, died Thursday, November 8, 2007, after complications from a tracheostomy. She was 49 years old.

Paper was highly revered in the bleeding disorders community as a trailblazer for women’s issues. “Renee was a remarkable woman—an activist and a crusader for all in our community,” said Anna DeSimone, NHF Director of Education. “Her pioneering work to raise awareness of bleeding disorders in women laid the foundation for the success of programs like Project Red Flag,”

Paper was also a mover and shaker for the entire bleeding disorders community. She founded the Hemophilia Foundation of Nevada in 1990, After moving to Henderson, Nevada, to accept a position as a triage nurse in the emergency department of St. Rose Dominican Hospital, she discovered that there was no chapter in the state, so she founded one. In 1990, the Hemophilia Foundation of Nevada was established.

Nationally, Paper was involved with several organizations. From 1993-94 she co-chaired the NHF subcommittee that wrote the NHF Bill of Patient Rights and Responsibilities.  In 1994, she helped found the Citizens for the Right to Know, a network of nearly 80 organizations representing patients with chronic health conditions, ensuring that they had accurate information on insurance coverage and benefits. She served on state and federal advisory boards for the Maternal and Child Health Bureau, an agency of the U.S. Department of Health and Human Services.

In 2006, along with Laureen Kelley, Paper wrote A Guide to Living with von Willebrand Disease, the first book on VWD.

Paper’s efforts were recognized by NHF, first in 1998 when she received the Dick James Lifetime Achievement Award, and most recently at NHF’s 59th Annual Meeting in Orlando. On Saturday, November 4, 2007, she was honored the Special Award for Activism on Behalf of Women with Bleeding Disorders.

 

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