We are a nonprofit consumer advocacy and service organization founded in 1990 to help meet the vast education and support needs of the bleeding disorders community in Nevada. In July of 2011 we merged with the National Hemophilia Foundation to provide the best possible programs and support to the community. The Nevada Chapter of the National Bleeding Disorders Foundation is committed to maintaining the commitment of our founder Renee Paper.
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 Hemophilia Treatment Center of Nevada, other agencies, and medical professionals to provide programs and services unique to those with bleeding disorders to best meet their needs.
Annual Needs Assessment
Each year NBDFNV asks the community we serve to take a 10 minute survey that offers insight into the needs of the community, how well our programs are meeting the needs, and what our focus areas for education and support should be going forward. The 2020 Survey was issued in January 2021 and received a 25% response rates. The assessment identified the following top five areas for education:
- Bleeding Disorders 101: Back to Basics
- Social & Emotional: Coping Skills & Support
- Medical: Navigating Care & Treatments
- Youth Education & Support
- Understanding Insurance
To see the full assessment results Click Here.
Chapter's Mission Statement
The Nevada Chapter of the National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation) is dedicated to finding cures for inheritable blood and bleeding disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive.
Chapter's Values
The Nevada Chapter values respect, education, responsibility, genuineness, humility, inclusiveness, empathy, equality, optimism and resilience.
About the National Bleeding Disorders Foundation
In August 2023, the National Bleeding Disorders Foundation announced its new name after 75 years as the National Hemophilia Foundation.
National Hemophilia Foundation was founded in 1948 by Robert and Betty Jane Henry, parents of a young boy with hemophilia. When their son, Lee, was born, the only treatment for hemophilia was blood transfusions. The life expectation for a person with hemophilia was around 24 years old. However, the Henrys were determined to do everything they could to make life better for their only son – including frequent blood transfusions from father to son.
The Henrys knew that there must be other families in the country like theirs, isolated by fear and frustrated by lack of research and treatment. With no organization to support them, Robert Henry decided to create what he and these other families needed. In 1948, he founded what was then called the Hemophilia Foundation. In the ensuing years, he would build the organization into one that brought doctors and researchers together, and supported families who were struggling to keep their children healthy. In 1954, he established the foundation’s Medical Advisory Council (now Medical and Scientific Advisory Council) to issue treatment and research recommendations for people with hemophilia. All across the country, chapters of the began to spring up, created by parents of children with hemophilia, who worked to organize blood drives, raise money and awareness, and encourage doctors and researchers to search for a cure.
Today, the foundation serves people across the US with all bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and platelet disorders. We support a network of 50 chapters across the country. We have given more than 22 million dollars to bleeding disorders research. We provide education and support to countless families with bleeding disorders, seek to find resources for undiagnosed women with bleeding disorders, and work tirelessly to protect access to healthcare on the state and local level. Each year, we also award the best and brightest in our community.
Robert and Betty Jane Henry founded the organization because they knew they could enact meaningful change by bringing families affected by bleeding disorders together. They wanted to ensure that people with bleeding disorders were heard by scientists and healthcare providers; legislators and government agencies. Decades later, we honor the legacy of the Henrys by ensuring the bleeding disorders community remains at the heart of everything we do.
