Updates

July 13, 2020July 13, 2020
Rooted in the Love of Cullen’s Grandparents, We Are Strong

About 14 years ago, our oldest son, Cullen, started showing signs of disease. For two years, we lived with the frustration of not knowing ... Read more
July 13, 2020July 13, 2020
Certain US Veterans More Likely to be Inappropriately Prescribed PDE5 Inhibitors

U.S. veterans with pulmonary hypertension (PH) due to left heart disease and chronic lung disease are more likely to be inappropriately prescribed phosphodiesterase-5 inhibitors ... Read more
July 10, 2020July 8, 2020
Giving Myself Permission to Feel the Hurt

Expressing vulnerability has always been difficult for me. I thought that “showing my brave face” would keep others from worrying. I have always been ... Read more
July 10, 2020July 10, 2020
Uptravi Safe and Effective Add-on Treatment for Children With PAH, Study Finds

Uptravi (selexipag), an approved oral therapy for adults with pulmonary arterial hypertension (PAH), appears to also be safe and effective as an add-on treatment ... Read more
July 9, 2020July 9, 2020
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, ... Read more

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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

Rooted in the Love of Cullen’s Grandparents, We Are Strong

Certain US Veterans More Likely to be Inappropriately Prescribed PDE5 Inhibitors

Giving Myself Permission to Feel the Hurt

Uptravi Safe and Effective Add-on Treatment for Children With PAH, Study Finds

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

PH Association Seeks Patient Videos, Photos for its Virtual Fashion Show

It’s Not ‘Back to Normal’ for Those With Chronic Illnesses

Stress Is Piling On, Which Exacerbates PH Symptoms

My Son Is Taking Over His Own Care Management

QuickFire Challenge Launched in Korea to Advance Healthcare Innovations

Tyvaso Improves Exercise Capacity of PH Patients in Group 3 WHO Classification, Data Show

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I’m Not ‘Lazy,’ I’m Sick

The Three Words That I Find Most Difficult to Say

How to Survive a Medical Move

Sotatercept Reduces Heart Strain, Improves Functional Capacity in PAH, Data Show

Learning to Love Myself Is Challenging With Chronic Illness

Way of Fine-tuning Vagus Nerve Stimulation, Potential PH Therapy, Seen

Newborns Seen at PH Risk if Fetal Growth Poor and Meconium Inhaled at Birth

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

It’s Important to Be Your Own Health Advocate

Tiny RNA Molecule, MicroRNA-483, May Help Ease PAH, Early Study Finds

How to Become Obsessed with Survival

Celebrating My First Anniversary of Writing ‘Worth the PHight’

As My Life Changes, ‘Recharged and Rewired’ Takes on New Meaning

Computer Model Seen to Accurately Distinguish PAH From PVOD

R-107 Shows Promise in Early Study for PAH Linked to COVID-19

How COVID-19 Is Shining a Light on Ableism

Tips for Battling Bronchitis When You Have PH

Why I Speak For Cullen

Aerami, Vectura Sign Deal to Develop Nebulized Imatinib

I Feel Isolated by My Struggle with Infertility

CAR Peptide Improves Remodulin Efficacy in PH Rat Model

Coalition Will Address Racial Disparities in Rare Disease Communities

Fewer PAH Hospitalizations With Uptravi Over Orenitram, Study Suggests

Juggling Health Admin and a Full-time Job

Coping with the Challenges of Change

The Secret Life of Sasha and How She Saved Me

Levosimendan Seen to Ease Pressure on Heart in High-need PH Patient Group

I’m 29 and Feeling Fine

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