Oct. 10, 2013
FDA Approves Tenth Drug for One Rare Disease Affecting Just 20-30,000 Patients: Pulmonary Hypertension Association Highlights Factors Contributing to Rapid Progress
The US Food and Drug Administration this week approved the tenth treatment, riociguat, for pulmonary hypertension (PH), a rare and life-threatening lung disease affecting roughly 20,000-30,000 patients, continuing the remarkable pace of recent progress that distinguishes PH from all but a handful of the 7,000 other rare diseases in this country. An eleventh PH drug will be considered by the FDA later this month. Read full press release
Oct. 3, 2013
All patients with systemic sclerosis (SSc) and connective tissue diseases should be screened for pulmonary arterial hypertension (PAH), an international panel of experts recommended in an article published in the September issue of the journal Arthritis & Rheumatism. The recommendations, part of a larger effort to improve patient outcomes by diagnosing earlier, identify specific tests to be performed in screening these patients for PAH. Read full press release
May 8, 2013
Pulmonary hypertension (PH), a rare and life-threatening lung disease, has gone from rapidly fatal to treatable with nine drugs developed in just the past 20 years, a phenomenal record for a rare condition. Growth in the understanding and treatment of PH reflects the dramatic progress possible since the passage of the Orphan Drug Act 30 years ago, according to the Pulmonary Hypertension Association (PHA), www.PHAssociation.org. Read full press release
Resources For Reporting on the Impact of the 1983 Orphan Drug Act (PDF)
Despite rapid progress in treatment for pulmonary hypertension (PH), an incurable lung disease, repeated misdiagnosis causes many patients to receive care only at advanced stages of the illness. In response, the Pulmonary Hypertension Association today launched an early diagnosis campaign to educate healthcare professionals to spot this disease and to refer patients earlier to specialty PH care.
The Pulmonary Hypertension Association (PHA), the Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center (LA BioMed) and Actelion Pharmaceuticals US, Inc., today announced that Dr. Ronald Oudiz of LA BioMed is the 2011 recipient of the Pulmonary Hypertension Association (PHA) Award of Excellence in Pulmonary Arterial Hypertension (PAH) Care. This annual award is designed to honor and acknowledge healthcare professionals who are committed to improving outcomes for patients with PAH through excellence in research and clinical practice.
Pulmonary hypertension (PH) is a rare, under-diagnosed disease that can strike people at any time, affecting newborns to the elderly or anyone in between. To raise global awareness of this invisible disease, the Pulmonary Hypertension Association (PHA) is partnering with the National Organization for Rare Disorders (NORD) and Rare Diseases Europe (EURORDIS) on Feb. 28, 2011, to observe Rare Disease Day.
This holiday season, nearly 50 million people will take to the air. Some will have to bring their own portable air in order to make it safely to their destination. The Pulmonary Hypertension Association, the national center for advocacy, education and events related to pulmonary hypertension (PH), offers travel tips for people relying on portable oxygen - including those living with PH.
Twenty-five years ago pulmonary hypertension (PH) patients had a 50-percent chance of surviving 2.8 years past diagnosis, but with new treatment options and the care of a PH specialist, more patients are living longer. This November, during Pulmonary Hypertension Awareness Month, they are working to ensure that the prognosis for this invisible, incurable disease continues to improve.
Orena Alsip of London, Kentucky will introduce the 2010 PuckerUp4PH Campaign in the U.S., March 29 – April 3 at South Laurel County High School in memory of her 14-year-old daughter Amber Newby who passed away from pulmonary hypertension (PH) in January.
The Pulmonary Hypertension Association announced today that three pulmonary hypertension specialists began their eight-day “Path to a Cure” journey to the 19,341-foot summit of Mt. Kilimanjaro to raise global awareness of PH, a disease that affects the heart and lungs. Spanish (Doc) | Danish (Doc)
This holiday season, the Pulmonary Hypertension Association, the national center for advocacy, education, and events related to pulmonary hypertension, offers tips for patients relying on portable oxygen - including people living with pulmonary hypertension.
PHA recently collaborated with NeedyMeds, a non-profit that connects patients who cannot afford their treatment to various prescription assistance programs and resources, to create a PH-specific resource page.
The Pulmonary Hypertension Association (PHA), Tufts Medical Center, and Actelion Pharmaceuticals US, Inc., today announced Dr. Nicholas Hill of Tufts Medical Center as the recipient of the 2009 PHA Award of Excellence in Pulmonary Arterial Hypertension (PAH) Care.
Pulmonary hypertension (PH) patients don’t have a lot of breath to spare, but the PH community is doing what it takes to spread the word about the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009 (H.R. 1030). The bill was introduced February 13 by Representative Kevin Brady (R-TX) and Representative Lois Capps (D-CA) who, despite their parties’ differences, are united in their fight against this rare, incurable disease.
The Pucker Up 4 PH Campaign, organized by the PHA in the United Kingdom (PHA-UK), is part of an international effort among the 47 PH associations in countries around the world to raise awareness of PH by collecting blue kisses.