The Colorado Chapter of the National Hemophilia Foundation (NHF Colorado) is responsible for addressing the challenges bleeding disorder patients and their families face through education, advocacy, and empowerment.
The Colorado Chapter of the National Hemophilia Foundation (NHF Colorado) is a nonprofit organization committed to the educational and psychosocial needs of the Colorado bleeding disorders community. NHF Colorado (formerly the Hemophilia Society of Colorado) was founded in 1974 as part of the national hemophilia network to provide resources and services for individuals and families living with bleeding disorders in the state of Colorado. In July 2011, Colorado, along with four other state chapters, merged with the National Hemophilia Foundation (NHF). The chapters work collaboratively with NHF, but are required to raise their own funds. It is estimated that NHF Colorado serves approximately 600 individuals and their families each year. On a daily basis, the organization is an invaluable resource to the bleeding disorders community, providing support, education, and information in a variety of forms.
Bleeding disorders are life-threatening, debilitating, and expensive to treat. A child with severe Hemophilia will spend over $200,000 annually to prevent bleeding. Some children and adults build up inhibitors to the treatment and the costs can exceed $1,000,000 per year. Failure to preventatively treat the disorder can result in prolonged painful bleeds that cause permanent and severe damage. Access to affordable and adequate health care is critical to being a self-sufficient, contributing member of society.
The entire family is affected by the bleeding disorder physically, emotionally, and financially. With over 35 years of experience, we provide programs and services to people affected by bleeding disorders so that they can better cope and can become self-advocates for themselves and/or their family. We partner with the University of Colorado Hemophilia Treatment Center, other agencies, and medical professionals to provide programs and services unique to those with bleeding disorders to best meet their needs.
"I am a survivor. My name is Malia Jackson and I am 21 years old. I was diagnosed with severe Von Willebrands disease at age two. From the beginning, I struggled with this disease. I can recall numerous nights screaming in pain from having to be poked with needles in order to infuse and feeling embarrassed by the bruises that often covered my legs and arms. I faced one of my greatest challenges at age twelve. I started my menstrual cycle and bled for 19 days and needed three blood transfusions. I almost lost this battle. I walk (in the Unite for Bleeding Disorders walk) not only for myself but for the many families and kids who struggle with this disease. I walk so that kids have the opportunity to attend camp and know they are supported. I walk so that kids can conquer their fears and feel empowered. Living with this disease is not easy, so it is important that we come together as a community."
Melissa, Kalvin's Mom "When Kalvin was 4 days old our lives were turned upside down!! We were told that our sweet baby boy had severe Hemophilia B and not to look it up online...a doctor would be in to talk to us in a few days. We were scared, lost, and completely felt alone. We had experienced NICU nurses that had NEVER taken care of a child with hemophilia. We didn't know who to turn to or how to find answers. Because of the support of the Colorado chapter of the NHF, hemophilia does not consume our lives. We don't have to worry about maximum lifetime out of pocket limits, finding new jobs every two years to ensure Kalvin has insurance, and how we are going to afford his medications. We are able to focus on our son, not the financial burdens of a serious chronic illness."