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What is Allergic Rhinitis?
What is it? Allergic Rhinitis / Hayfever It’s an allergy that mainly affects the nose. What are the Symptoms? Frequent sneezing, constantly blocked or runny nose, itchy nose and/or eyes. Also...
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Getting nosey about CF
Getting Nosey about CF is a very informative short film made by the Cystic Fibrosis Trust UK to help children understand their CF and to explain to siblings and other children what CF is.
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An update on Kalydeco
Vertex pharmaceuticals, the company who pioneered the revolutionary Kalydeco drug treatment currently available for people with the GFF1D mutation – around 4% of the population, will be presenting...
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Mushrooms cooked in butter, rosemary & lemon
This is a great one if you can get your child to eat mushrooms. They’re jam packed full of goodness. In the absence of sunlight or supplements, eating mushrooms is a good way to up your vitamin D...
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Big news for DF508 carriers
On May 12, 2015, the Pulmonary-Allergy Drugs Advisory Committee of the U.S. Food and Drug Administration (FDA) will hold a hearing to discuss Vertex Pharmaceuticals’ new drug application for approval...
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Nathan Charles Unstoppable
An inspirational video of the rugby player who got to the top and played with the best. He also happens to have cystic fibrosis.
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ORKAMBI given the green light for FDA Review
This week's positive recommendation brings the cystic fibrosis community one step closer to potential approval of the first medicine to treat the underlying cause of this disease for many more people...
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QLD Orkambi trial shows really positive results
Queensland researchers may have discovered a game-changing treatment for children suffering from cystic fibrosis. The Queensland Children’s Medical Research Institute has released results from...
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Keeping CF lungs infection free
A must watch for any CF paediatric parent. Different doctors give different advice. So do different clinics. There’s no getting around it. We do not have an agreement on modes and models of care from...
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FDA approves Orkambi
Orkambi, a New Cystic Fibrosis Drug, Wins F.D.A. Approval By ANDREW POLLACK JULY 2, 2015 nytimes.com A new drug for people with the most common genetic type of cystic fibrosis won approval from the...
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PharmaNAC gets the thumbs up from Standford trial
A new study by Stanford University suggests PharmaNAC which provides NAC the precursor for the antioxident glutathione could be a useful supplement for lung health in cystic fibrosis patients.
View ArticleAn Open Letter from Future Patient Org
What’s Stopping You Appointing A Patient Director? An open letter to all healthcare organisations davidngilbert 6 days ago Original Post…
View ArticleVertex reports great results for its latest trials targeting double DF508 and...
Hopefully by now you’ve all seen the fantastic results that Vertex reported last week regarding their latest trials with precision…
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