Updates

December 17, 2018December 17, 2018
Delayed Diagnosis, More Comorbidities Affect Elderly PH Patients’ Prognosis, Study Suggests

Older patients diagnosed with pulmonary hypertension (PH) present a specific clinical profile and have a worse prognosis, a study shows. Given this, a ... Read more
December 14, 2018December 14, 2018
Study Links Certain High-density Lipoproteins, Better Survival in PAH Patients

Higher levels of certain high-density lipoproteins (HDLs) improve the survival of pulmonary arterial hypertension (PAH) patients, according to a recent evaluation of two PAH ... Read more
December 14, 2018December 13, 2018
With PH, I Know Each Hospital Stay is Not My Last

“Hopefully we won’t see you back here any time soon!” “Let’s hope not!” This was the conversation between my nurse and me as I ... Read more
December 13, 2018December 13, 2018
Analytics 4 Life, Actelion Testing Non-invasive Diagnostic Tool CorVista for PH

Analytics 4 Life and Actelion Pharmaceuticals have announced a collaboration agreement to test CorVista as a potential cardiac imaging technology for the diagnosis of ... Read more
December 12, 2018December 11, 2018
Echocardiograms Are an Emotional Experience After PH and CHD

Last week I went in for a cardiac ultrasound (I call this exam an echo). I’ve probably had hundreds of them in my life, ... Read more

News, PAH News

Genetic Variants Near Two Genes Linked to PAH Risk, Large Study Reports
December 12, 2018December 12, 2018
Genetic variants close to the SOX17 and the HLA-DPB1 genes are linked to pulmonary arterial hypertension (PAH), ...
News, PH News

Study Suggests DLCO as Indicator of Survival in Group 3 Pulmonary Hypertension
December 10, 2018December 10, 2018
Low diffusing capacity of the lung for carbon monoxide (DLCO) is a key indicator ...
News, PAH News

Switching from Tyvaso to Uptravi Safe, Convenient for PAH Patients, Phase 3b Study Finds
December 7, 2018December 7, 2018
Switching treatment from United Therapeutics’ Tyvaso (inhaled treprostinil) to Actelion’s Uptravi (oral selexipag) is safe ...
Columns, Recharged and Rewired - a Column by Brittany Foster

Reminders for the Days I Feel Like I’m Not Doing Enough
December 7, 2018December 5, 2018
Some days, I feel well enough to make the most out of each day. ...
CTEPH News

CTEPH Software Receives FDA’s Breakthrough Device Designation
December 6, 2018December 7, 2018
The U.S. Food and Drug Administration (FDA) granted Breakthrough Device Designation to software being ...
News, PAH News

Uptravi, PAH Treatment, Now Publicly Funded in 9 of 10 Canadian Provinces
December 5, 2018December 6, 2018
Uptravi (selexipag) is now available with public funding for pulmonary arterial hypertension (PAH) patients ...

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Morphogen-IX Announces MGX292 as Treatment Candidate for PAH
December 3, 2018December 4, 2018
Biotechnology company Morphogen-IX recently announced that it will be further developing MGX292 as its treatment ...
PhaseBio Advances New Phase 2b Trial to Test PB1046 in Patients with PAH
November 30, 2018December 4, 2018
PhaseBio Pharmaceuticals started dosing its investigational compound PB1046 in patients with pulmonary arterial hypertension ...
An Invisible Illness and the PHight of Our Lives
November 29, 2018December 4, 2018
Specific Bone Marrow Cells Drive PAH Development, Blocking Serotonin Receptors a Potential Treatment, Study Suggests
November 29, 2018December 5, 2018
First Clinical Site Announced for Phase 2 Trial Testing Levosimendan for PH Linked to Heart Disease
November 28, 2018November 29, 2018
Raising Levels of Immune Cell Receptor Known as TLR3 May Better Treat PH, Early Study Reports
November 26, 2018November 28, 2018

Arena Pharmaceuticals, United Therapeutics Reach Global Licensing Agreement for Ralinepag
November 21, 2018November 28, 2018
Arena Pharmaceuticals and United Therapeutics have reached a global licensing agreement for the pulmonary arterial hypertension (PAH) ...
Choosing to Say ‘Yes’ to Treatments Isn’t Always Easy
November 16, 2018November 26, 2018
Heart’s Right Side Size Affects Heart Function in PAH Patients, Study Shows
November 16, 2018November 26, 2018
Revatio at Low Doses Safe and of Benefit to Children with PH, Study Reports
November 15, 2018November 26, 2018

Range of Clinical Trials Testing INOpulse System for PAH, PH-linked Lung Diseases, Bellerophon Announces
November 14, 2018November 28, 2018
INOpulse is advancing in a number of clinical trials as a potential treatment of ...
My Recent CPAP Use Has Triggered Traumatic Memories
November 14, 2018November 20, 2018
Severity of Pulmonary Hypertension Raises Risk of Fetus Death, Review Finds
November 12, 2018November 20, 2018

News

Treprostinil Prevents Cellular Responses Linked to Arterial Remodeling and PAH, Study Reveals
November 9, 2018November 16, 2018
Treprostinil is a therapy that works to reduce pulmonary artery narrowing in people with pulmonary ...
Columns, Recharged and Rewired - a Column by Brittany Foster

Pay Attention to the Positive Voices
November 9, 2018November 15, 2018
People say that bad things happen in threes. I think that saying is a ...
News, PAH News

Transgelin Protein May Provide Clues on PAH Progression in Congenital Heart Disease, Study Says
November 8, 2018November 14, 2018
Transgelin, a smooth muscle protein, is abundant in patients with irreversible pulmonary arterial hypertension ...
News, PH News

People with Mild Pulmonary Hypertension Have Increased Risk of Death, Study Indicates
November 7, 2018November 7, 2018
Patients with mild pulmonary hypertension (PH), with a mean pulmonary arterial pressure between 19 ...
News

Pulmonary Hypertension Association Increases Focus on PH Awareness in November
November 5, 2018November 13, 2018
The Pulmonary Hypertension Association (PHA) will be using social media throughout this month to increase ...
Columns, Recharged and Rewired - a Column by Brittany Foster

Being Newly Diagnosed Can Cause Mixed Emotions
November 2, 2018November 13, 2018
“When we’re headed toward an outcome that’s too horrible to face, that’s when we ...
News, PAH News

Liquidia Completes Enrollment for Safety Portion of Phase 3 Trial on LIQ861 for PAH
November 2, 2018November 9, 2018
Liquidia Technologies has completed the enrollment for the safety part of a Phase 3 ...
News

Specific Blood Flow Pattern in Patients with PH and Aortic Stenosis Linked to Poorer Outcomes, Study Reports
November 1, 2018November 8, 2018
Patients with pulmonary hypertension (PH) and severe aortic stenosis (AS), who have a specific, less frequent blood flow ...
Columns, Life After PH – A Column By Kathleen Sheffer

Challenges and Insecurities While Working with PH and Transplant
October 31, 2018November 8, 2018
Lately, I’ve been so busy with my freelance photography business that I haven’t had ...
News, PAH News

Ventavis Shows Limited Ability to Improve Long-term Survival Rates in PAH Patients, Real-World Data Suggests
October 31, 2018November 6, 2018
Treatment with inhaled Ventavis (iloprost) has limited effectiveness in improving the survival rate of ...
News

#NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach
October 30, 2018November 6, 2018
With the U.S. midterm elections now less than two weeks away, patient advocacy groups ...
News, PH News

Scientists Discover New Genes and Signaling Pathways Involved in Severe Lung Disease in Premature Infants
October 29, 2018November 2, 2018
A set of new genes and signaling pathways linked to the development of severe ...
News, PH News

Portopulmonary Hypertension Leads to Poor Outcomes in Liver Transplant Recipients, Study Reports
October 26, 2018October 31, 2018
Portopulmonary hypertension (PoPH) affects a significant proportion of patients who undergo a liver transplant and ...
News, PH News

Serum NLRC3 Levels Identified as Potential Non-invasive Biomarker for PH
October 25, 2018October 26, 2018
Serum NLRC3 levels are markedly lower in patients with pulmonary hypertension, and correlate with results ...
News, PH News

Team PHenomenal Hope Offering $500 Grants to Meet Everyday Needs of PH Patients
October 24, 2018October 25, 2018
The nonprofit organization Team PHenomenal Hope is welcoming applications for $500 micro-grants awarded through a program ...

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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