Updates

March 25, 2019March 25, 2019
Congenital Heart Defects May Lead to PH, Other Complications Later in Life, Expert Says

Heart defects that develop before birth may lead to a variety of complications later in life, including pulmonary hypertension (PH), according to cardiologist Sanjay Gandhi, ... Read more
March 22, 2019March 20, 2019
Realizing My Worth in Relationships

One thing I have learned in my 27 years is that relationships aren’t always built to last. Some people have come into my life ... Read more
March 22, 2019March 22, 2019
Polysplenia Syndrome a Risk Factor for Early PH, Study Suggests

People with polysplenia syndrome — a condition characterized by a “left-sidedness” on both sides of the body — have an increased risk for early ... Read more
March 21, 2019March 21, 2019
Resverlogix Obtains Funding for Phase 2 Trial Testing Apabetalone in PAH

Resverlogix announced that it has received funding from the Canadian Institutes for Health Research for a Phase 2 clinical study investigating the safety and ... Read more
March 20, 2019March 20, 2019
Opsumit Has Potential to Improve Right Ventricle Function in PAH Patients, Phase 4 Data Show

Treatment with Opsumit (macitentan) can significantly improve the heart’s right ventricular function, reverse cardiac tissue remodeling, and reduce pulmonary vascular resistance (PVR) in ... Read more

News, PAH News

Cell Therapies Show Potential as Treatment for PAH, Review Finds
March 18, 2019March 18, 2019
Regenerative cell therapy can induce significant improvements in key clinical features of pulmonary arterial ...
News

Defining Five Main Categories of Pulmonary Wellness: A Rehab Specialist’s Advice
March 15, 2019March 22, 2019
“The whole is greater than the sum of its parts.” — Aristotle In today’s healthcare ...
News, PAH News

Estrogen May Help Protect Against Heart Changes in PAH, Animal Study Suggests
March 15, 2019March 22, 2019
Estrogen, one of the major female sex hormones, has a protective effect in pulmonary ...
Columns, Recharged and Rewired - a Column by Brittany Foster

PH Life Feels Like Residing in a Waiting Room
March 15, 2019March 19, 2019
I get anxious just thinking about what it’s like sitting in a waiting room ...
News, PAH News

Liquidia’s LIQ861 Safe and Effective in PAH Patients, Phase 3 Trial Suggests
March 14, 2019March 19, 2019
A Phase 3 clinical trial testing LIQ861 met its primary objective, showing that the investigational inhaled ...
News

Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
March 14, 2019March 20, 2019
Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will ...

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1st Participant Enrolled in Phase 2 Trial of Levosimendan for PH Patients with Heart Failure
March 13, 2019March 13, 2019
The first participant has been enrolled in a Phase 2 trial testing the investigational ...
Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
March 12, 2019March 12, 2019
With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn ...
Study Reveals Possible Reason for Women’s Higher Risk of PAH
March 11, 2019March 11, 2019
With PH, I Choose to Be Cautiously Optimistic
March 8, 2019March 15, 2019
Spouses of PH Patients Feel Insecure, Want to be More Involved in Partner’s Care, Study Finds
March 8, 2019March 15, 2019
Study Identifies Factors that May Increase PH Risk After Atrial Septal Defect Repair
March 7, 2019March 13, 2019

Transition from PDE5i to Adempas Without Washout Period Deemed Safe
March 6, 2019March 12, 2019
Transition from phosphodiesterase-5 inhibitors (PDE5i) — such as United Therapeutics’ Adcirca (taladafil) and Pfizer‘s Revatio ...
Skiing Put My Life with PH in a New Light
March 6, 2019March 12, 2019
NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research
March 5, 2019
Children with IPH Have Similar Transplant Survival Rates as Those with Other Indications, Study Says
March 4, 2019March 4, 2019

Unexpected Life Lessons from My Hospital Roommate
March 1, 2019March 7, 2019
My repeated hospitalization cycle since November has tested my physical and mental strength. When pain, ...
Living Well with Pulmonary Hypertension? Yes We Can! (A Rehab Specialist’s Advice)
March 1, 2019March 7, 2019
Doctors Urge Early Diagnosis to Save Lives in PH, Other Rare Diseases
February 28, 2019March 7, 2019

News, PH News

Compound 3 Shows Promise in Relieving PH Disease Features, Study Says
February 27, 2019March 5, 2019
Compound 3 is a potent and selective inhibitor of ROCK-1 and ROCK-2 — proteins ...
News

WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April
February 26, 2019February 26, 2019
The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government ...
News, PH News

Revatio Treatment After Mitral Valve Surgery Found to Alleviate PH Symptoms
February 25, 2019March 4, 2019
Treatment with Revatio (sildenafil) after surgery to the heart’s mitral valve significantly lowered pulmonary ...
News, PAH News

Complexa Starts Dosing in Phase 2 Trial to Evaluate CXA-10 for PAH
February 22, 2019February 28, 2019
The first patient has been given the investigational therapy CXA-10 in an ongoing Phase ...
CTEPH News, News, PAH News

Higher Levels of 2 Autoantibodies Could Help Diagnose CTEPH and PAH, Study Suggests
February 21, 2019February 27, 2019
Patients with chronic thromboembolic pulmonary hypertension (CTEPH) and pulmonary arterial hypertension (PAH) have higher ...
News

Vienna to Host RARE2019 Meeting on Rare Diseases
February 21, 2019February 27, 2019
About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city ...
CTEPH News, News

Balloon Pulmonary Angioplasty Can Shorten CTEPH Patients’ Hospital Stays, Study Reports
February 20, 2019February 25, 2019
Greater experience in balloon pulmonary angioplasty (BPA) enables shorter hospital stays for patients with chronic ...
News, PAH News

Approved Lung Cancer Therapy Dacomitinib Shows Promise in Treating PAH, Animal Study Finds
February 18, 2019February 22, 2019
Dacomitinib, a medicine recently approved by the U.S. Food and Drug Administration for the ...
Columns, Recharged and Rewired - a Column by Brittany Foster

Have You Joined the Pulmonary Hypertension News Forums Yet?
February 15, 2019February 14, 2019
My support systems provide me with courage, sympathy, and compassion and help me to ...
News

Pulmonary Artery Denervation Can Improve CpcPH Patients’ Outcome, Trial Shows
February 15, 2019February 22, 2019
Invasive pulmonary artery denervation is safe and can improve the outcome of patients with ...
Columns, Life After PH – A Column By Kathleen Sheffer

Heart-lung Transplant Inspires Art, Valentines
February 14, 2019February 20, 2019
The night before my heart-lung transplant, I was in my high school art studio ...
News, PAH News

Ventavis Improves Right Ventricle Function in Certain PAH Patients, Study Shows
February 14, 2019February 20, 2019
Acute treatment with Ventavis (iloprost) improves the heart’s right ventricular (RV) function in patients ...
News

CHEST Releases Updated Guidelines for PAH Treatment
February 13, 2019February 18, 2019
An updated guideline with new recommendations for the treatment of patients with pulmonary arterial ...
News

Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide
February 12, 2019February 12, 2019
Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities ...
News

Wireless Monitoring May Help Transition of Therapy in PAH, Study Suggests
February 11, 2019February 11, 2019
An implantable wireless system may help guide the transition from medication administered intravenously — Remodulin ...

March 2, 2018March 1, 2018

Being Patient Is Difficult when You’re a Patient

Columns, Recharged and Rewired - a Column by Brittany Foster

“You just have to be patient.” I can’t begin to count how many times I’ve heard this throughout my years of managing chronic illness. Although I have 26 years of experience with doctor’s appointments, testing, surgeries, medications, and the ... Read more

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