Updates

April 8, 2020April 8, 2020
Sex Hormones Not Found to Play a Role in PAH Development in Single-Center Study

Despite previous evidence to the contrary, a single-center study suggests that sex hormones do not influence the development or progression of pulmonary arterial hypertension ... Read more
April 7, 2020April 7, 2020
NORD’s Advice on COVID-19: You’re Stronger Than You Think

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to ... Read more
April 6, 2020April 2, 2020
I Ditched My Dietary Rules to Embrace Cooking as Therapy

I’ve written before about how I have adjusted my diet since my pulmonary hypertension diagnosis, but this isn’t something I’ve always found easy. ... Read more
April 6, 2020April 2, 2020
How My Family Survived Months of Illness, Worry, and Boredom

Since Feb. 26, many Christians around the world, including me, have been following the 40 days of Lent. It is a time of fasting ... Read more
April 6, 2020April 1, 2020
Kindness Matters, So Let’s Work to Unite Our PH Community

“If I could tell the world just one thing, it would be that we’re all OK.” –Jewel Through the years, I have noticed that ... Read more

CTEPH News, News

Balloon Pulmonary Angioplasty May Safely Treat Inoperable CTEPH
April 6, 2020April 6, 2020
Balloon pulmonary angioplasty (BPA) is a safe and effective, minimally invasive treatment for people ...
News, PAH News, PH News

Experts Issue Guidance on Use of Oral PPAs, Like Uptravi, in Treating PAH
April 3, 2020April 3, 2020
A consensus on the use of oral prostacyclin pathway agents (PPAs), like Uptravi (selexipag), ...
Columns, Recharged and Rewired - a Column by Brittany Foster

My ‘Normal’ State Is Constantly Changing
April 3, 2020March 31, 2020
In recent years, I have heard the words “you’ll get used to it” more ...
News, PAH News

Reata Stops Bardoxolone PAH Trials Amid COVID-19 Concerns
April 1, 2020April 1, 2020
Reata Pharmaceuticals is stopping clinical trials evaluating bardoxolone methyl in people with pulmonary arterial ...
News

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum
March 31, 2020March 31, 2020
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 ...
Chronically Uncool – a Column by Ellie Bird, Columns

I’m Learning Healthier Coping Mechanisms
March 30, 2020March 26, 2020
Physical and mental health are closely linked. Many people who struggle with long-term conditions ...

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Immunosuppressives Seen to Aid SSc-PAH Patient with Rare Antibody
March 30, 2020March 30, 2020
A 62-year-old with systemic sclerosis-associated pulmonary arterial hypertension (SSc-PAH) was successfully treated with immunosuppressants ...
The Struggle Is Real: Losing and Gaining Weight Due to Illness
March 30, 2020March 26, 2020
The average person might feel some concern about how they look and feel in ...
Dealing with Anxiety Caused By Life’s Uncertainties
March 30, 2020March 26, 2020
Pulmonary Fibrosis Patient Spearheads Lung Transplant Foundation to Help Others
March 27, 2020March 27, 2020
PHA Adds Four Newly Accredited Centers of Comprehensive Care to its Network
March 27, 2020March 27, 2020
Goal by Goal, I Climbed Out from the Pit of Despair
March 27, 2020March 25, 2020

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19
March 25, 2020March 25, 2020
Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate ...
COVID-19 Patient with PH Treated with iNO Via Genosyl, VERO Biotech Announces
March 25, 2020March 25, 2020
Staying Well (and Sane) During Coronavirus Self-isolation
March 23, 2020March 20, 2020
First-line Combo Therapy Best for Patients with CTD-PAH, Analysis Shows
March 23, 2020March 23, 2020

When Two Heroes Met: Recalling My Son’s Encounter with a Baseball Legend
March 23, 2020March 20, 2020
Do you need to hear a happy and uplifting human interest story? Here is ...
Orenitram Tablets More Cost-effective Than Uptravi as PAH Treatment, Study Suggests
March 20, 2020March 20, 2020
Staying Positive During a Global Pandemic
March 20, 2020March 19, 2020

CTEPH News, News

Major Bleed Risk Higher With Warfarin Than Xarelto in CTEPH Patients, Study Finds
March 18, 2020March 19, 2020
Among people with chronic thromboembolic pulmonary hypertension (CTEPH), certain anticoagulants may reduce the risk ...
News

Phase 2 Trial of Levosimendan in PH-HFpEF Patients Fully Enrolled
March 16, 2020March 16, 2020
The Phase 2 HELP study testing levosimendan as a potential treatment for pulmonary hypertension (PH) has exceeded its ...
Columns, Life As A Caregiver - a Column By Colleen Steele

Tips for Dealing with Coronavirus: Be Practical and Don’t Panic
March 16, 2020March 12, 2020
Since no one is talking about it, I decided to write about the new ...
News, PH News

Bellerophon, FDA Agree on Design of Phase 3 INOPulse Clinical Trial
March 13, 2020March 13, 2020
Bellerophon Therapeutics has reached an agreement with the U.S. Food and Drug Administration (FDA) ...
Columns, Worth the PHight - a Column by Jen Cueva

For National Kidney Month, I Share My Experience with Chronic Kidney Disease
March 13, 2020March 11, 2020
March is National Kidney Month, the perfect time to remind people with pulmonary hypertension ...
Columns, Recharged and Rewired - a Column by Brittany Foster

My Nightmares Are Real-life Flashbacks
March 13, 2020March 11, 2020
When I was younger, I had recurring nightmares about a kidnapping. Usually, I was ...
News, PAH News

More PAH Cases in US Southwest than Registry Reports, Study Says
March 11, 2020March 11, 2020
The number of both new and existing cases of pulmonary arterial hypertension (PAH) in ...
News

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
March 10, 2020March 10, 2020
The number of treatments for children with rare diseases has grown over the past decade, ...
Chronically Uncool – a Column by Ellie Bird, Columns

Disruptive Side Effects Are a Daily Battle
March 9, 2020March 5, 2020
I have been living with pulmonary hypertension for more than two years. When I ...
News, PH News

Persistent PH in Newborns Linked to 3 Rare Genetic Mutations, Study Finds
March 9, 2020March 9, 2020
Genetic screening of patients with persistent pulmonary hypertension of the newborn (PPHN) found three ...
Columns, Life As A Caregiver - a Column By Colleen Steele

Don’t Judge Another’s Journey: The PH Road Is a Rocky One
March 9, 2020March 5, 2020
Many of us have a tendency to judge ourselves and others based on our ...
News, PAH News

Mutations in BMPR2 Gene More Common in Men with PAH, Study Reports
March 6, 2020March 6, 2020
Men with pulmonary arterial hypertension (PAH) are more likely to carry mutations in the ...
Columns, Recharged and Rewired - a Column by Brittany Foster

I See the Fragility of My Life as an Advantage
March 6, 2020March 4, 2020
I remember attending a Tim McGraw concert a few years ago. I could have ...
Columns, Worth the PHight - a Column by Jen Cueva

Why Is It so Difficult to Take Time to Pause?
March 6, 2020March 4, 2020
Life is hectic, wouldn’t you agree? Some days I find myself overwhelmed from living ...
News

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
March 4, 2020March 4, 2020
In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media ...

March 2, 2018September 11, 2019

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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