On March 1, the Nebraska Chapter of the National Hemophilia Foundation (NHF) kicked off an awareness and advocacy campaign that supports Nebraskans affected by bleeding disorders, including hemophilia and von Willebrand disease.
Hemophilia is a very rare disorder—only 125 Nebraskans have hemophilia. And one out of every 5,000 boys born has hemophilia, which makes it about as rare as triplets, according to NHF. This genetic disorder causes a person's blood to not be able to clot normally, which, according to NHF, is not a problem with a simple cut or scrape. Instead, it affects bleeding inside the body, especially bleeding into joints like the knees, elbows and ankles. Bleeding inside other parts of the body, such as the brain, throat and abdomen, can be life-threatening, the NHF says.
In 2016, NHF and the U.S. Department of Health and Human Services worked together to designate March as an official U.S. health observance month — Bleeding Disorders Awareness Month. That same year, NHF launched the Red Tie Campaign, which challenges people nationwide to support the bleeding disorders community. As Nebraskans, you can join the Nebraska Chapter to help families in our local community. The Nebraska Chapter of NHF is proud to be one of the 22-member charities supported by Community Health Charities of Nebraska (CHC-NE), soon to be CHAD (Combined Health Agencies Drive).
The Red Tie Campaign aims to advance the fight against inheritable bleeding disorders by raising funds for research, education and advocacy initiatives. As part of the campaign, the organization also hosted an Advocacy Hill Day on March 5, in which volunteers were briefed about the happenings in the Nebraska Legislature that are pertinent to the Nebraska Chapter.
The advocacy program has brought a portion of affected families to the Capitol to advocate for hemophilia awareness, access to health care and Medicaid. In 2018, NHF worked hard to focus on year-round advocacy with its community, ensuring that it was continually touched on and was a part of its education and outreach.
The Red Tie Campaign runs from March 1 through April 17, which is World Hemophilia Day. To get involved, the Nebraska Chapter of the NHF encourages you to visit its website or contact Maureen Grace, Executive Director, at mgrace@hemophilia.org or 402-499-0825.