• ORGANIZATION PROFILE
  • Hemophilia of North Carolina Hemophilia of North Carolina

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(35.82374,-78.83073)
 

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Mission Statement

Hemophilia of North Carolina is a non-profit organization whose goal is to assist, involve and educate persons affected by bleeding disorders. We promote opportunities for improving the quality of life for persons with hemophilia and all bleeding disorders in the state of North Carolina.

Description

Hemophilia of North Carolina is a non-profit 501c3 organization which has been assisting the bleeding disorders community in the state for over 30 years. We are members of the National Hemophilia Foundation, Hemophilia Federation of America, Community Health Charities of North Carolina and the NC Center for Nonprofits. We support families and individuals through ongoing educational programs, peer support groups, patient advocacy, emergency financial assistance, scholarships and summer camps for our children.

Hemophilia is a genetically transmitted bleeding disorder in which the blood does not clot normally. There is no cure for hemophilia. While treatment exists for most forms of the disease, it is costly and may require lifelong infusions of replacement clotting factor. In about 1/3 of cases there is no know prior family history of hemophilia. Rather the disorder results from a spontaneous genetic mutation.

The bleeding disorders community was devastated in the late 80's when the nation's blood supply became contaminated by the HIV virus. Over 90% of Americans with severe hemophilia became infected with AIDS and more than 50% of those infected have died. Through the advocacy efforts of those in the hemophilia community, laws were passed and continue to be in effect to make sure the nation's blood supply remains safe to all Americans. Members of the community and their national organizations continue to remain vigilant in tracking the collection and processing of the blood supply in this country.

The most common bleeding disorder in women is von Willebrand disease. According to recent guidelines released by the National Heart Lung and Blood Institute, up to 1% of the population is affected and most don't even know it.

For more information about Hemophilia of North Carolina and how you can help, please contact us. Together we can make a difference!

Website

http://www.hemophilia-nc.org

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