Our Focus
The Colorado Chapter of the National Bleeding Disorders Foundation (NBDF Colorado) is responsible for addressing the challenges bleeding disorder patients and their families face through education, advocacy, and empowerment.
El Capítulo de Colorado de la Fundación Nacional de Trastornos Hemorrágicos (NBDF Colorado) es responsable de abordar los desafíos que enfrentan los pacientes con trastornos hemorrágicos y sus familias a través de la educación, la defensa y el empoderamiento.
Our Mission ... In Action
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We connect people in the bleeding disorder community to available, applicable resources and to one another. Through connection we don't have to go through this alone.
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We fight to protect access to quality healthcare and treatments we need to live healthy lives, but we can't do it without your voice. Discover how you and your family can make a big difference by joining our advocacy efforts.
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We are committed to trailblazing the way for those affected by bleeding disorders. We encourage our community members to step out into nature, to forage ahead on their own path of independence.
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We are committed to educating people inside and outside the bleeding disorder community. Education is empowerment and we strive to encourage independence through learning.
News Articles
The commercialization of hemophilia AAV gene therapies in recent years has created a steep learning curve for clinicians, patients, and other stakeholders in the bleeding disorders community. As a novel treatment unlike any that has come before, gene therapy has compelled a series of questions and considerations relevant to its efficacy, safety, patient eligibility, implementation, cost/reimbursement, and more.
NBDF monitors emerging therapies and changes in the therapeutic landscape that may affect people living with bleeding disorders. One of those developments involves BioMarin’s decision to out-license (allowing another company to market and sell) ROCTAVIAN, their gene therapy for adults with severe hemophilia A.
This statement from BioMarin explains their decision:
The latest Resource Roundup (RR) is dedicated to women, girls, and people with the propensity to menstruate (WGPPM), all historically underserved groups within the inherited bleeding disorders community. While recognition of these populations and their struggles to achieve healthy equity has increased recently, affected individuals continue to face challenges when it comes to timely diagnosis and management.
