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Promising results for drug candidate CS1
This press release reports that over the 12 months of their Expanded Access Program enrolling ten patients, the majority of patients with pulmonary arterial hypertension who completed treatment with drug candidate CS1 maintained or improved their functional and biomarker status, and that CS1 showed a favourable safety and tolerability profile. A Phase IIb trial for CS1 begins this summer. Read the Cereno Scientific press release
Robyn Kalda
19 hours ago1 min read


Time to wave your Disability Pride flag!
July is Disability Pride Month The current design of the Disability Pride flag (shown as this post's image) dates from 2021, and each element has a meaning: All six flag colors: Disability spans borders between nations Black background: Mourning for victims of ableist violence and abuse Diagonal Band: Cutting across the walls and barriers that separate disabled people from society Red Stripe: Physical disabilities Gold Stripe: Neurodivergence White Stripe: Invisible and undia

PHA Canada
6 days ago2 min read
Using sotatercept off-label in children
Clinical trials for sotatercept didn't include children, so any pediatric use is off-label. This study, conducted at one children's hospital in San Diego, evaluated sotatercept in 7 pediatric patients with pulmonary arterial hypertension who were already on triple therapy. A majority of patients had favourable hemodynamics trends, supporting the need for official pediatric studies. Read the Pediatric Cardiology article
Robyn Kalda
Jul 61 min read


Congratulations to Dr. Stephen Archer, Member of the Order of Canada
PHA Canada was delighted to note Dr. Stephen Archer’s name in a list of Order of Canada appointees. He was appointed a Member of the Order of Canada on June 26. As the Governor General’s website says, “Stephen Archer is an internationally acclaimed cardiologist. His seminal discoveries in pulmonary arterial hypertension and its underlying mechanisms have led to novel therapies and improved patient care. He has influenced important health care initiatives, including the creati

PHA Canada
Jul 21 min read


June 29 is World Scleroderma Day
On June 29, along with our partner organization Scleroderma Canada and many others, we mark World Scleroderma Day. Scleroderma is a progressive autoimmune disorder that causes skin and internal organs to harden and thicken. It can cause scarring in the lungs and in the arteries of the lungs, affecting oxygen absorption. Each year about 1% of people with scleroderma develop pulmonary arterial hypertension, so there are many people with both scleroderma and pulmonary hypertensi

PHA Canada
Jun 291 min read
Phase 1 trial of treprostinil prodrug patch succeeds
A 9-participant phase 1 clinical trial used a patch to deliver a prodrug of treprostinil (a prodrug is something that is metabolized into the drug in question inside the body). Each participant wore a patch for 24 hours. The researchers found that treprostinil levels were steady, that different patch sizes could probably be used to deliver different doses, and that it was generally safe and well-tolerated. The company plans to continue clinical development. Read the press rel
Robyn Kalda
Jun 291 min read
Sotatercept lowers blood volume but increases exercise ability
In a study of a relatively low-risk population of pulmonary hypertension patients, researchers began to untangle sotatercept's complex effects on exercise. Sotatercept lowered blood volume to normal levels and increased hemoglobin, allowing greater oxygen delivery during exercise. As well, muscles seemed to be able to extract more oxygen. At rest, people's bodies maintained oxygen delivery levels as the blood volume decreased, and the heart seemed to work less hard. Cardiac o
Robyn Kalda
Jun 221 min read


10 Years of Medical Aid in Dying
Talking about end-of-life decisions is never easy, but it’s an important conversation many in our community grapple with. A decade ago, Canada legalized medical assistance in dying (MAID). Since then, MAID has transformed end-of-life choice and care for thousands of people across the country. To mark this important milestone, our friends at Dying With Dignity Canada have released a new report examining public attitudes toward MAID. In the spring, PHA Canada invited Dying W

PHA Canada
Jun 171 min read
AI May Help Predict PAH Patients' Risk of Worsening
Researchers looked at the medical records of 455 people with pulmonary arterial hypertension (PAH) to find factors associated with getting worse. Using a machine-learning computer model, they found 11 clinical features linked to a higher chance of a worsening event, but only body mass index and red cell distribution width were statistically significantly associated with clinical worsening. About half of the patients experienced a worsening event during the study, usually with
Robyn Kalda
Jun 151 min read
Sotatercept and cardiopulmonary comorbidities
This study from one clinic examined how well sotatercept worked in real-world patients with pulmonary arterial hypertension (PAH) who also had other heart or lung conditions, such as coronary artery disease, high blood pressure, lung scarring, or COPD. After six months of treatment, patients generally needed less oxygen, walked farther in six-minute walk tests, and showed improvements in their overall risk scores. Most side effects, such as nosebleeds or increased red blood c
Robyn Kalda
Jun 81 min read


Annnnnd, breathe!
June 3 is Clean Air Day in Canada Air quality in Canada is relatively good, but anyone with pulmonary hypertension (PH) will be aware that air quality affects our health. Air pollution from humans burning fossil fuels for transportation, home heating and cooking, and in industry is significant, but due to climate change, air pollution from dust, pollen, and wildfires is also increasing. For people with pulmonary hypertension, air quality is especially important. On World Pulm
Robyn Kalda
Jun 32 min read


Men's Health Month: Shifting Perspectives on PH
In Canada and around the world, June is recognized as Men’s Health Month. Men often delay seeking medical care and discussing symptoms openly, so this month, there is a heavy emphasis on encouraging men to seek support and get checked for any health concerns. The same pattern of delay in seeking medical care is also seen with pulmonary hypertension (PH), which mostly affects women. Despite the increased incidence of pulmonary hypertension in females, studies suggest that men
Dhaval Thanavala
Jun 12 min read
Start up: Supporting PAH patients beginning prostanoids
This study looked at a French support program designed to help people with pulmonary arterial hypertension (PAH) start and adjust their dose of selexipag. Nurses called patients three days after patients started treatment or changed doses to monitor side effects and provide guidance. Most patients were able to reach their best individual dose within about 11 weeks, and most side effects were mild or manageable. Both patients and healthcare providers reported very high satisfa
Robyn Kalda
Jun 11 min read
Sotatercept vs. selexipag in severe PAH
Researchers used AI to indirectly compare data from three randomized controlled trials looking at sotatercept or selexipag in pulmonary arterial hypertension (PAH). Their findings suggest that sotatercept may reduce PAH-related events more effectively than selexipag, although the inference is based on reconstructed, indirectly compared data. Read the Cureus article
Robyn Kalda
May 251 min read


CRDN's RAREvolution Scholarship Program
The Canadian Rare Disease Network (PHA Canada is a member) has launched a national scholarship supporting youth living with rare diseases to pursue post-secondary education in Canada. People between 17 and 29 years old, with any rare disease, are eligible. Scholarships are up to $5,000 for full-time students and up to $2,500 for part-time students. There's an information webinar on May 27—register here—and applications close June 12, 2026, at 5 pm Eastern time. See the CRDN w

PHA Canada
May 191 min read
Screening for PH in ILD
This study looked at how to better detect pulmonary hypertension (PH) in people with interstitial lung disease (ILD), since PH often makes breathing problems, quality of life, and survival worse. Researchers found that combining several common tests—such as lung function tests, heart ultrasounds, and CT scans—was more helpful for identifying PH early than relying solely on a doctor’s overall impression. Certain signs, including low oxygen levels, enlarged pulmonary arteries,
Robyn Kalda
May 191 min read


New Book: No Cure for Me
I wrote No Cure for Me as a long-time survivor of pulmonary hypertension. Knowing that I may be one of Canada’s longest survivors, it sparked a thought—what if one day I became the world’s longest survivor? I’ve set my sights on living to 103, and along the way, I couldn’t help but imagine how remarkable it would be to earn a place in the Guinness World Records. That idea—part hope, part determination—became the seed for this thriller. Writing it was my way of blending realit
Carolyn Mathur, Patient
May 151 min read


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
Nicole Dempsey, Patient
May 112 min read
Biomarkers identified for high-altitude PH
This study looked at which proteins and metabolic biomarkers might be associated with the development of high-altitude pulmonary hypertension (PH). Looking at data from China, from rat tissues, and from the UK biobank, the researchers identified four proteins and 11 metabolites and built what they describe as a "robust predictive model" to predict and prevent high-altitude pulmonary hypertension. Read the Journal of Cardiovascular Development and Disease article
Robyn Kalda
May 111 min read


Canadian PH researchers identify a gene leading to heart failure in PAH
This week is Heart Failure Awareness Week. As this year's awareness campaign says, it's not normal to be breathless! Heart failure is, unfortunately, one of the consequences of pulmonary hypertension. The right side of the heart can adapt for a while by getting thicker and stronger, but it's hard to tell why it eventually starts to fail, and this happens at different times for different patients. Raising awareness about this serious condition is important: early detection hel

PHA Canada
May 72 min read
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