Drug funding refusal for three children afflicted with rare disease to be reviewed
The father of three children afflicted with a rare enzyme disease remains hopeful the province will pay for a costly drug therapy, despite receiving word last week that the Health Ministry had rejected his application. Health Minister Dustin Duncan met ...
Treatment funding denied for 3 children with rare genetic diseaseGlobalnews.ca
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Rapid City man fights rare skin disease that afflicts only 27 people
Rapid City Journal
Now, the divorced father of two children is fighting for his life against a rare, painful disease diagnosed in just 27 other people worldwide — an illness so devastating that makes his skin fall off. The 1988 graduate of Rapid City Central High School ...
Funding For Rare Disease Treatment Denied, But Health Ministry Will Reconsider
The executive director of an advocacy group for rare diseases like Morquio Syndrome is puzzled as to why access for treatment has been denied for 3 Saskatoon siblings. Andrew McFadyen, from the Isaac Foundation, along with the children and their father ...
Health Ministry denies funding for Sask. siblings with rare genetic disease650 CKOM News Talk Radio
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Harlow woman hopes to start charity for sufferers of rare disease
A mother with a rare disorder is hoping to turn the foundation she set-up into a registered charity. Gemma Holtby, 33, of Potter Street, Harlow, was diagnosed in 2012 with very long-chain acyl-CoA dehydrogenase deficiency. Because of the VLCAD Gemma's ...
Awareness campaign on rare diseases in kids launched
The city-based JK Lone Hospital and Lysosomal Storage Disorder Support Society (LSDSS) launched a campaign today to create awareness about rare diseases in children. Under the campaign titled 'Ek Prayas', awareness will be created about rare forms ...
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Lack of funding for rare lung disease 'costs lives'
An incurable lung disease is claiming lives because of a lack of funding and research, according to a charity. The British Lung Foundation says IPF (idiopathic pulmonary fibrosis) kills about 5,000 people a year, and is on the rise, but there is low ...
Steps 2 Cure to raise awareness for rare disease
COLONIE, NY (NEWS10) – People were out at the Crossings in Colonie to bring awareness and raise money for a disease that most people don't even know exists. More than one-hundred people showed up to show their support as part of the second annual ...
Otago Daily Times
Toni Street battling rare disease
Otago Daily Times
Toni Street has revealed she's battling a rare auto-immune disease and is "worried that I'm not going to be around to look after my girls". The Seven Sharp presenter and mother-of-two tells this week's Woman's Day that her diagnosis of Churg-Strauss ...
Toni Street battling deadly auto-immune diseaseScout
Toni Street's private health battleStuff.co.nz
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Local Parents Hoping to Raise Awareness After Son, 4, Diagnosed with Rare ...
A local family is trying to keep their spirits up after a diagnosis of a rare disease. Four-year-old Yeshua Thrower was diagnosed with Duchenne's Muscular Dystrophy in September of 2014. The muscle degeneration disease generally has a grim prognosis.
Newborns in Missouri should be screened for rare disease
A simple $7-$9 test given at birth can identify a rare disease, severe combined immune deficiency. A bone marrow transplant in the first three months of life will not only prevent the infant from dying, but could cure him. Missouri is one of 16 states ...
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