Updates

June 24, 2019June 24, 2019
Poor Adherence to PDE-5i Linked to Adverse Effects in PAH Patients, Study Finds

Adverse effects are associated with poor adherence to phosphodiesterase-5 inhibitors (PDE-5I) as treatment for patients with pulmonary arterial hypertension (PAH) treated via an integrated ... Read more
June 24, 2019June 21, 2019
Walking Together: My Sons’ High School Graduation Was Extra Special

My son’s pulmonary arterial hypertension (PAH) was idiopathic, which means it developed suddenly with no known cause. He was healthy until he became symptomatic ... Read more
June 21, 2019June 19, 2019
Talk Therapy Has Helped Me to Reach Acceptance and Learn to Advocate

Life with chronic illness is not easy. My days are unpredictable, and I often feel unsure and uneasy about what lies ahead. Some days ... Read more
June 21, 2019June 21, 2019
FDA Approves Generic Bosentan Tablets in US for PAH Treatment

A new generic version of Actelion’s Tracleer (bosentan) developed by Teva Pharmaceutical was approved by the U.S. Food and Drug Administration (FDA) ... Read more
June 20, 2019June 20, 2019
Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their ... Read more

CTEPH News, News

Balloon Pulmonary Angioplasty and Adempas Both Effective for Inoperable CTEPH, Analysis Shows
June 20, 2019June 20, 2019
A new meta-analysis assessing balloon pulmonary angioplasty (BPA) and Adempas (riociguat) for treating inoperable ...
News

Oxygen Manifesto, Part 2: the Devices (Advice from 3 Respiratory Specialists)
June 19, 2019June 19, 2019
Note: This is the second article in a three-part series written in collaboration with ...
News, PAH News

Chloride Channel TMEM16A May Be Therapeutic Target for IPAH, Study Suggests
June 19, 2019June 19, 2019
Patients with idiopathic pulmonary arterial hypertension (IPAH) have greater levels and activity of a ...
News

‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy
June 18, 2019June 21, 2019
People with rare diseases know that the right government policies can make a big ...
Columns, Life As A Caregiver - a Column By Colleen Steele

The Hidden Truths About My Strength
June 17, 2019June 21, 2019
I wish I had a dollar for every time I’ve been described as strong, ...
News, PAH News

Opsumit Shows Promise for Portopulmonary Hypertension in Phase 4 Trial
June 17, 2019June 17, 2019
Treatment for 12 weeks with Actelion Pharmaceuticals’ Opsumit (macitentan) significantly improved blood vessels’ resistance in ...

Subscribe to our mailing list

Get regular updates delivered to your email box.

Thanks! Please check your email for a confirmation email.

Moving Forward Despite the Setbacks
June 14, 2019June 12, 2019
In the last few months, I have spent more time in the hospital than ...
Mouse Study Finds Causal Link Between Iron Levels and Pulmonary Hypertension
June 14, 2019June 14, 2019
A new study in mice demonstrated that a lack of iron in muscle cells ...
Exposure to Traffic-Related Air Pollutants Linked to Disease Severity in PAH, UK Study Shows
June 13, 2019June 18, 2019
FDA Approves Novitium Pharma’s Generic Sildenafil for PAH Treatment
June 12, 2019June 12, 2019
Grouped Measures of Clinical Worsening May Help Predict Outcomes in Children with PAH, Study Suggests
June 10, 2019
Am I a Caregiver or a Mom?
June 10, 2019June 6, 2019

Having Hope Saved My Life Before Major Surgery
June 7, 2019June 4, 2019
A month ago, I wasn’t sure when I would be writing again. I wrote ...
Liquidia Moves Closer to Requesting FDA Approval of LIQ861 for PAH
June 7, 2019June 7, 2019
AIT Therapeutics Secures $8M to Further its Nitric Oxide Delivery System for Respiratory Conditions
June 6, 2019June 6, 2019
Revatio Reduces Symptoms of PPHTN, Allowing Safe Liver Transplant, Case Report Shows
June 5, 2019June 5, 2019

AIT Therapeutics’ New Nitric Oxide Ventilator Safer for Patients and Healthcare Staff, Study Shows
June 3, 2019June 3, 2019
AIT Therapeutics’ on-demand nitric oxide (NO) ventilator is safer for patients with pulmonary hypertension ...
Results Support Therapeutic Intra-vascular Ultrasound (TIVUS) for PAH
May 31, 2019May 31, 2019
Owlstone, Actelion Team Up to Develop Breath-based Test for Diagnosing PH
May 30, 2019May 30, 2019

CTEPH News, News, PAH News, PH News

Bayer US Launches $1 Million Grant Program to Boost Clinical Research into PH
May 29, 2019May 29, 2019
The Pulmonary Hypertension Accelerated Bayer (PHAB) Awards, recently launched by Bayer US, will grant ...
News

Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries
May 27, 2019May 27, 2019
RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims ...
News, PAH News, PH News

Blood Vessel Changes in the Eyes Linked with Lung Vascular Damage in PAH, Study Finds
May 24, 2019June 18, 2019
A type of abnormality in small blood vessels of the eyes, called retinal vascular ...
News, PAH News

Uptravi Beneficial Regardless of When Started, But More Effective if Started Early, Analysis Suggests
May 23, 2019June 18, 2019
A new analysis of Actelion‘s GRIPHON clinical trial indicates that Uptravi (selexipag) tablets reduce the ...
CTEPH News, News

Balloon Pulmonary Angioplasty Reduces Sleep Apnea in Patients with CTEPH, Study Shows
May 22, 2019June 3, 2019
Balloon pulmonary angioplasty reduces sleep apnea in chronic thromboembolic pulmonary hypertension (CTEPH) patients, according ...
News, PAH News

Resverlogix Announces Promising Findings on Apabetalone, Will Launch Phase 2 Trial in PAH Patients
May 20, 2019June 3, 2019
Promising preclinical findings recently published in a peer-reviewed journal opened the door to the ...
News

Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns
May 16, 2019June 3, 2019
With 250 rare diseases newly identified every year, scientists can barely keep up — ...
News, PH News

Clinical Development of INOpulse for PH Continues to Move Forward, Bellerophon Reports
May 15, 2019June 3, 2019
Bellerophon released an update on the latest data regarding its INOpulse therapy, and announced its ...
News

Balloon Pulmonary Angioplasty Can Improve Survival of Patients with Inoperable CTEPH, Study Suggests
May 13, 2019June 3, 2019
Survival rates of patients with chronic thromboembolic pulmonary hypertension (CTEPH) unable to undergo surgical ...
Columns, Recharged and Rewired - a Column by Brittany Foster

Pain Makes Me Lose the ‘Real Me’ and I Don’t Like the Person I Become
May 10, 2019May 23, 2019
My pain levels vary. Some days I feel “OK,” and I can go outside ...
News, PH News

Mallinckrodt’s INOmax Improves Oxygenation of Newborns with PH, Interim Study Analysis Shows
May 9, 2019May 9, 2019
INOmax (nitric oxide) gas improved the oxygenation of premature, term, and near-term newborns with pulmonary ...
News

Herbal Compound Silibinin Eases Early Signs of PAH in Rats, Study Shows
May 8, 2019May 8, 2019
A natural component of milk thistle seeds called silibinin can lessen some early signs ...
News, PAH News

Teva Launches Generic Version of PAH Therapy Letairis in US
May 6, 2019May 6, 2019
Teva Pharmaceutical Industries launched a generic version of Letairis (ambrisentan) in the United States ...
Columns, Recharged and Rewired - a Column by Brittany Foster

The Waiting Is the Hardest Part: Anticipation Heightens My Anxiety
May 3, 2019May 2, 2019
When I was younger, I was always “waiting” for something to happen. I can ...
PH News

PALS Uplifts the Spirits of Rare-Disease Patients by Offering Free Flights
May 3, 2019May 3, 2019
Cumbersome security procedures, rising airfares, and shrinking legroom have made commercial air travel difficult ...

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

Subscribe to our mailing list

Pin It on Pinterest