Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…
When Arica Svoboda thinks of her two children, Hayes and Hendrix, she can’t help but fill up with love. She tells Patient Worthy: “My boys are special. Their smiles and…
At 29 years old, Morgan Nuchols is living the fullest life that she can. She loves challenging herself by doing puzzles. But her favorite activity? Making birthday and holiday cards…
The 300 million people living with rare diseases seldom receive appropriate medical treatment. Unlike common chronic diseases for which there are established and constantly evolving treatments and interventions, those with…
The University of Pittsburgh School of Medicine along with Prairie View A&M University, have recently uncovered that there are some cancer drugs which could be used as an effective treatment…
Alveolar capillary dysplasia with misalignment of the pulmonary veins (ACD/MPV), or alveolar capillary dysplasia (ACD) for short, is a rare, congenital, and life-threatening disorder. Without receiving lung transplants in infancy,…
A recent study has found that aerobic and strength training exercise programs can have a long term effect on physical functioning for patients with pulmonary hypertension (PH). PH is a…
In 2009, the FDA approved Tyvaso (treprostinil) Inhalation Solution to reduce symptoms associated with Group 1 pulmonary hypertension (PH), also known as pulmonary arterial hypertension (PAH). Beyond symptom reduction, the…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Aibe Shreve is only four years old, and he has already overcome so many obstacles in his short life. The little boy from Ohio Valley was born with two holes…
Recently, Pulmonary Hypertension News shared some burgeoning medical news: that the DNMT3B gene has now been linked to the development of pulmonary hypertension (PH) and a rare form of chronic high blood…
United Therapeutics Corporation has recently presented data from the Phase 3 INCREASE trial, which evaluated Tyvaso as a treatment for pulmonary hypertension associated with interstitial lung disease. Results were presented…
Pulmonary hypertension can be caused by a variety of other conditions, often making it difficult to distinguish. A problem that medical professionals often encounter is differentiating pulmonary arterial hypertension (PAH)…
Pulmonary Hypertension Association The Pulmonary Hypertension Association (PHA) is headquartered in Silver Spring, Maryland. It was formed in 1991 by 4 women passionate about finding a cure. Additionally, they hope…
The Danger of Stereotypes There is still a huge stereotype that women are prone to "hysteria." This leads to a general distrust in women's self-reported symptoms. Physicians consciously or unconsciously…
The PoppyPocket The PoppyPocket is a wearable pocket, created to make wearing infusion pumps and well as other medical devices easier, safer, and more comfortable. It comes with two pockets,…
What is Bronchopulmonary Dysplasia? Bronchopulmonary Dysplasia (BPD) is a diagnosis most commonly given to premature newborns. In children, BPD is also the most common cause of Pulmonary Hypertension (PH). Premature babies often develop…
About Pulmonary Hypertension Pulmonary Hypertension (PH) is a form of high blood pressure which affects the arteries. Primary Pulmonary Hypertension refers to a type of the condition whose origin is unknown. Secondary…
"PHinding Your Hope" This is the largest gathering of the PH disease community in the world. This will be an opportunity for empowerment for patients with PH. Participants will learn…
Patients with a form of scleroderma called systemic sclerosis are particularly susceptible to developing high blood pressure in their heart and lungs, also known as pulmonary hypertension. A new study…
Time is running out to register for #PHAontheRoad in Pittsburgh on Saturday, Sept. 9th at the Hyatt Regency Pittsburgh International Airport hotel. This is the @PulmonaryHypertensionAssociation’s last “on the road”…
If you're a patient of rare disease, it's nice to know that there are medical professionals out there fighting for you. Check out what's happening in the professional world of…
El 90-95% de las personas que viven con la sarcoidosis, la enfermedad afecta a los pulmones. A medida que crecen granulomas a través de los órganos, que pueden experimentar tos,…
On June 23, 201, a little boy named Jackson was born. He weighed in at a healthy seven pounds, three ounces, and was 20.5 inches long, and his parents were…
Pulmonary Hypertension is a rare and debilitating condition that can prove fatal in as little as three years unless specialized treatment is given. The Pulmonary Hypertension Association has developed an accreditation process…
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