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Colorado Chapter, National Hemophilia Foundation Offers Innovative Support to the Bleeding Disorder Community

Bleeding disorders are serious, lifelong, and expensive. The Colorado Chapter, National Hemophilia Foundation (NHF Colorado) has worked for more than 35 years to provide programs and services to all Coloradoans affected by bleeding disorders to increase health equity, knowledge, and independence.   

NHF Colorado, a member of the Colorado Nonprofit Association, operates with an unwavering determination to ensure the voice of this constituency is heard and to affect positive change. This is accomplished through financial support, acting as a liaison to build relationships between patients and the Hemophilia Treatment Center, promoting research, and helping to devise tools and resources to meet community needs.

To enhance equity for females in the bleeding disorder community, NHF Colorado is holding a Women’s Retreat on October 13 at the Washington Park Boathouse. This unique convening offers a powerful opportunity to join together in an engaging, serene and inclusive environment to strengthen connections while participating in mind, body, and self-care practices. Learn more about the Women's Wellness Retreat HERE

NHF Colorado snapshot...

  • NHF Colorado runs Mile High Summer Camp annually, offering more than 80 children from the bleeding disorder community a chance to participate in a weeklong camp experience away from home that includes physical activity, education, and self-infusion mentorship from older teens.  

  • Self-Infusion Series operates throughout the year to give patients and parents the chance to learn or practice self-infusion skills under the medical supervision of the HTC nursing staff.

  • Backpacks + Bleeders cultivates adaptable independence one meaningful adventure at a time by challenging our community to think beyond their limitations and enjoy the outdoors, promoting a healthy living and resilient lifestyle. Activities encompass a multitude of outdoor activities throughout the year, ranging indoor rock climbing to hiking a classic Colorado 14er.  

  • There is no cure for hemophilia. With the benefit of research advances, financial and emotional support, and continued education on bleeding disorders those affected can thrive without arbitrary barriers. NHF Colorado works to make this ideal a reality.  

Why our work matters...

In the early 1900s, there was no way to store blood. People with hemophilia who needed a transfusion typically received fresh, whole blood from a family member. Life expectancy was 13 years old.

By the late 1950s and early 1960s, fresh frozen plasma was transfused in patients in the hospital. However, each bag of the plasma contained so little of the necessary clotting factor that huge volumes had to be administered. Many children experienced severe joint bleeds that were crippling.

By 1960, the life expectancy for a person with severe hemophilia was less than 20 years old.

By the mid-1980s, it was confirmed that HIV/AIDS could be transmitted through the use of blood and blood products, such as those used to treat hemophilia. Approximately half of the people with hemophilia in the US eventually became infected with HIV through contamination. Thousands died and the overwhelming impact of HIV on the bleeding disorders community continued for decades. Similarly, the hepatitis C virus (HCV) infection was transmitted through contaminated factor products, pooled from the blood of hundreds of thousands of donors. Before testing for HCV began in 1992, an estimated 44% of all people with hemophilia had contracted it.

The early years of the 21st century have brought new recombinant products made without human or animal plasma derivatives, lowering the possible risk for allergic reactions to the products or inhibitors. New longer-lasting products promise to decrease regular infusion rates from 2-3 times per week to once-weekly or even less, while developments in gene therapy offer promise for future advancement. NHF Colorado provides critical advocacy that continues to push for community awareness, enhanced treatment, and medical advancement.

Learn more at https://cohemo.org | Find NHF Colorado on Facebook and Twitter

 

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