A New PAH Education Course for Better Patient Care

Pulmonary arterial hypertension (PAH) patient Nicole Dempsey was involved in developing a new online Continuing Medical Education course, PAH in Practice: A Case-based Online Learning Program for Better Patient Care, alongside pulmonary hypertension experts Dr. Steeve Provencher, Dr. Kristina Kemp, and Dr. Rhea Varughese. This type of training is an important step forward in improving awareness and understanding of this rare condition: because PAH symptoms can be nonspecific and easily mistaken for other illnesses, earlier recognition by frontline healthcare providers can make a meaningful difference in how quickly patients are referred, diagnosed, and treated. Expanding access to practical, case-based education helps ensure that more clinicians feel confident identifying PAH.

We asked her about her experience as a patient representative.

What was your role?

"My role was to share a little about my experience, living with PAH—to talk about my journey from diagnosis to current day. I discussed the importance of early diagnosis and having a good care team.  I provided a bit of insight about what it's like to live with PAH and how I can help others who are newly diagnosed.  We talked about support groups (online and in person), mentorship, treatment options, and side effects."

What was it like being involved in developing this module?

"It's always an honour being asked to share my story. It feels empowering when I can potentially help others by sharing my story.  I think it's equally important to educate health professionals.   Sometimes when I talk about my own story with others (as I did for this module), it really makes me see how far I've come in my journey.  This module reminded me that I also always have something to offer to new patients, even in the face of adversity."

Do you have any thoughts on how involvement like this helps the patient community?

"Anytime a patient can share their lived experience with others, it helps other new patients feel supported.  You can validate their feelings of anxiety, grief and confusion.  I think it's important that PH is known, that accurate information is out there, and that support is out there for the patient community."

Anything else that you'd like people to know?  

"When I was doing this module, it reminded me that I should always practice what I preach. I often offer advice to new patients, yet I don't always follow it myself.  It reminded me that I, too, still need support from the PH community and always will."

Educational initiatives like this one are especially valuable because they bring together clinical expertise and real-world patient perspectives—something that can’t always be captured in textbooks or guidelines alone. By hearing directly from patients like Nicole, healthcare providers can better understand the day-to-day realities of living with PAH, from navigating side effects to building support networks, ultimately leading to more compassionate and effective care.

The course, intended for medical professionals, is free and available until September 30, 2026. We encourage clinicians and care teams to take advantage of this opportunity to deepen their knowledge of PAH and help strengthen the quality of care available to patients everywhere.