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Dave Proctor gets attention for rare diseases at Parliament Hill meeting
Ultrarunner Dave Proctor, whose attempt to break the cross-Canada speed record on foot has been halted by a back injury, met with MPs and senior policy advisers on Parliament Hill today to discuss funding for rare diseases, the cause he hit the road for in late June. Proctor, along with his family, Maureen Smith of the Canadian Organization for Rare Diseases (CORD), and Isabel and Tyler Jordan, founders of the Rare Disease Foundation, met with Co…
United Therapeutics Announces FDA Approval Of The Implantable System For Remodulin®
SILVER SPRING, Md. and RESEARCH TRIANGLE PARK, N.C., July 31, 2018 /PRNewswire/ -- United Therapeutics Corporation (NASDAQ: UTHR) today announced approval by the U.S. Food and Drug Administration (FDA) of a New Drug Application (NDA) for the use of Remodulin (treprostinil) Injection in the Implantable System for Remodulin® (ISR). The ISR has been developed under a collaboration with Medtronic (NYSE: MDT). In December 2017, Medtronic received F…
United Therapeutics Announces FDA Approval Of The Implantable System For Remodulin® 2
SILVER SPRING, Md. and RESEARCH TRIANGLE PARK, N.C., July 31, 2018 /PRNewswire/ -- United Therapeutics Corporation (NASDAQ: UTHR) today announced approval by the U.S. Food and Drug Administration (FDA) of a New Drug Application (NDA) for the use of Remodulin (treprostinil) Injection in the Implantable System for Remodulin® (ISR). The ISR has been developed under a collaboration with Medtronic (NYSE: MDT). In December 2017, Medtronic received F…
Supplementing Pulmonary Arterial Hypertension Therapy With Nutritional Changes
Fatigue and exercise intolerance are common features of pulmonary arterial hypertension (PAH), and poor exercise capacity is a predictor of worse prognosis.1 Emerging research suggests that nutritional status may have a role in the etiology and severity of these symptoms. "While patients [with PAH] have a number of risk factors for poor nutrition and nutritional deficiencies, there has been a lack of large-scale studies reporting these nutriti…
SOX17 Gene May Contribute to PAH with Congenital Heart Disease, Study Suggests
SOX17 may be a risk gene that contributes to pulmonary arterial hypertension (PAH) associated with congenital heart disease (CHD), as well as to idiopathic and/or familial PAH, according to researchers. Their study, “Rare variants in SOX17 are associated with pulmonary arterial hypertension with congenital heart disease,” was published in the journal Genome Medicine. Current evidence indicates that CHD occurs in up to 30% of adult-onset and…
'You are NOT disabled!': Teenager, 19, with hidden illness slams 'judgmental' anonymous driver
A teenager with a life limiting disorder has hit back at a 'judgmental' person who accused her of not actually being disabled. Yasmin Swift, from Ashford, Kent, has a serious lung disorder which severely limits her quality of life. After being diagnosed around seven months ago with idiopathic pulmonary arterial hypertension, the 19-year-old hairdresser has faced a daily battle, struggling to do the simplest of tasks without becoming out of …
PHinding Your Hope: A Four Day Breakdown of PHA’s 2018 International Conference
PHA Canada Ambassador and Fondation HTAPQ Board Member, Judith Moatti, shares some of her experience attending the 2018 PHA International Conference. Judith Moatti lives in Montreal, Québec. She was first diagnosed with Pulmonary Arterial Hypertension (PAH) in 2009, and has since become a PAH-Spokesperson, a support group leader for patients living or affected by PH in her region, as well as a patient representative for HTAPQ. In July of 2018, Ju…
You can help create a national Pharmacare program that works for rare disease communities
Did you know that the federal government is currently looking to develop a national drug plan? And did you know that you now have the opportunity to join the conversation and help make a difference? Access to prescription drugs in Canada is currently provided through a mix of privately purchased and publicly funded drug programs that vary from province to province. This means drug access and pricing depend on the type of insurance you have, and …
Where the Purple Saxifrage Blooms: My Arctic Shoreline Encounters with PH
While every PHighter’s journey is unique, certain patients’ stories stand out as particularly exceptional. Living in Kugluktuk, Nunavut, an Inuit community of 1,500 bordering the Arctic Ocean, Millie Kuliktana has overcome many challenges that accompany life with PH in one of Canada’s most northern communities.
Cancer Marker NEDD9 Could Be a Therapeutic Target for PAH, Study Suggests
A cancer marker called NEDD9 is a critical mediator of pulmonary arterial hypertension (PAH) and could be a therapeutic target, according to new research. The study, “NEDD9 targets COL3A1 to promote endothelial fibrosis and pulmonary arterial hypertension,” was published in the journal Science Translational Medicine. Fibrosis (scarring) is an important source of damage in lung arteries of patients with PAH, resulting in an increased effort …
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