PRESS RELEASE: MARCH 1, 2023
Upequity and The Coalition for Hemophilia B announced a joint project to conduct critical research today. The study, Perspectives of Patients (POP), will conduct an analysis to gain a better understanding of the needs of Hemophilia B patients and caregivers from diverse communities through the lens of the patient and caregiver.
“Navigating the diagnosis, care, treatment, trials, and lives of individuals with hemophilia has its share of challenges. Much can be learned through listening, documenting, and understanding the experiences of underserved communities,” said Kim Phelan, COO of The Coalition for Hemophilia B.
The POP project will look at the current state of the healthcare experience for the underrepresented in the Hemophilia B community and will set forth key recommendations for meaningful, sustainable change and improvement. “Our goals are to document areas of needed change that can directly improve the lived experience of patients and caregivers with Hemophilia B,” noted Kimberly Haugstad, CEO of Upequity.
The scope of this project will exclusively focus on individuals and families with Hemophilia B in the United States and its territories. Outreach to communities of color, women, and those underserved by geographical constraints will be a priority focus. Recommendations and solutions will be designed to address the most critical issues raised by patients and caregivers in diverse communities. The data and understanding of critical needs and gaps gained will be used to inform the Coalition for Hemophilia B and its partners to champion change efforts. “In order to best serve all members of our community with the highest level of treatment, we must have a better understanding of the way different groups in our community are treated,” stated Kim Phelan.
About The Coalition for Hemophilia B
The Coalition for Hemophilia B strives to make quality of life the focal point of treatment for people with hemophilia B and their families through education, empowerment, advocacy, and outreach. The organization is a national non-profit that is dedicated to fostering a diverse, equitable, and inclusive experience for everyone across our organization, both internally and externally. Learn more at https://www.hemob.org.
Upequity exists to challenge the status quo and advance change that helps families with rare and serious diseases live their healthiest, best lives. Upequity is a registered 501c3 non-profit that delivers patient-centered, evidence-based research, explores novel solutions, and incubates emerging entities on their non-profit journey. The organization focuses on work that has impact and supports and advances underserved communities with rare and serious chronic health conditions. Learn more at https://upequity.org.
The Coalition for Hemophilia B: Greg Pitkoff
Upequity: Anna Landseadel