No One Should Navigate PNH Alone: PNHCA Launches New Educator Program for Patients and Caregivers
The Canadian Association of PNH Patients (PNHCA) is thrilled to announce the launch of the PNH Educator Program, an innovative initiative designed to provide personalized, non-clinical support and educational guidance for people living with Paroxysmal Nocturnal Hemoglobinuria (PNH) and their families.
The program connects patients and caregivers directly with a dedicated PNH Educator who can help them better understand the disease, navigate questions and concerns related to living with PNH, and access trusted educational resources in a supportive and compassionate setting.
"Living with PNH can often feel overwhelming," says Barry Katsof, Founder and President of PNHCA. "The PNH Educator Program was created to ensure that people living with this disorder and their families have access to meaningful support, reliable information, and a knowledgeable person who understands the real-life challenges they may face."
Through one-on-one virtual or telephone meetings, the PNH Educator can help people:
Discuss quality-of-life concerns related to PNH
Prepare for upcoming healthcare appointments
Learn more about PNH and its symptoms
Understand available treatment options and how they are administered
Leading the program is Tracy Bencze, RN, MEd, an experienced registered nurse and educator with a strong background in acute and critical care, patient education, health literacy, advocacy, and program development. Tracy is passionate about supporting individuals living with complex and rare diseases and helping patients and families become informed and empowered participants in their care.
“My goal is to provide a welcoming environment where people can ask questions, access information, and feel supported as they navigate life with PNH," said Bencze.
Whether you're newly diagnosed or have been living with PNH for some time, the program offers an opportunity to access guidance that can help you better understand and manage your condition while empowering you with information and confidence throughout your journey.
The PNH Educator Program is intended to complement, but not replace, conversations with healthcare professionals. You should always discuss health concerns and treatment decisions with your healthcare team.
To learn more about the PNH Educator Program, visit WWW.pnhca.org/PNHEducator