Blog
RSS FeedPosted by Michael Wonder on 20 Feb 2018
Vertex offers ‘portfolio approach’ to secure access to CF meds
19 February 2018 - Vertex has presented NHS England with an “innovative long-term framework proposal” that hopes to secure access ...
Posted by Michael Wonder on 19 Feb 2018
Should the NHS fund a new drug costing £1million for Ollie and Amelia?
19 February 2018 - They have a deadly genetic disease their parents say is being halted by Brineura, but officials ...
Posted by Michael Wonder on 12 Feb 2018
Drug company says it will negotiate terms to allow children to access new treatment for rare genetic disorder
12 February 2018 - NICE has published draft guidance that does not recommend the drug cerliponase alfa (Brineura; Biomarin) for children ...
Posted by Michael Wonder on 29 Jan 2018
Rare disease medicine changes offer clarity
29 January 2018 - Proposed changes to the provision of medicines for rare diseases should bring greater certainty for people ...
Posted by Michael Wonder on 29 Jan 2018
Medicines Australia welcomes LSDP review outcomes
28 January 2018 - Medicines Australia welcomes the Government’s announcement of an outcome from the post-market review of the Life ...
Posted by Michael Wonder on 28 Jan 2018
Review of the Life Saving Drugs Program - final report and Government response
28 January 2018 - After nearly 4 years and 3 health ministers, the final report and Government's response to the ...
Posted by Michael Wonder on 12 Jan 2018
Pharma collaborates to improve chances of NICE backing Duchenne drugs
11 January 2018 - A group of pharma companies and Duchenne UK are collaborating to improve the chances of new ...
Posted by Michael Wonder on 20 Dec 2017
NICE turns down rare skin disease implant
20 December 2017 - The National Institute for Health and Care Excellence has rejected Clinuvel UK’s afamelanotide for treating erythropoietic ...
Posted by Michael Wonder on 10 Dec 2017
Rare cancer treatment a success for Jie Eccles
9 December 2017 - Six months ago Jie wrote an open letter to the readers of news.com.au asking them to help ...
Posted by Michael Wonder on 05 Dec 2017
The Webster family spent their life savings to save their son Matthew after rare cancer diagnosis
3 December 2017 - When David and Jennifer Webster’s son Matthew was diagnosed with a rare cancer, they didn’t think ...
Posted by Michael Wonder on 05 Dec 2017
Adelaide mum makes plea for cystic fibrosis drug to be added to PBS
5 December 2017 - At 30 years old, Adelaide mother-of-two Emmah Evans may have just seven years left to live. ...
Posted by Michael Wonder on 21 Nov 2017
Mum fights to get drug on PBS
21 November 2017 - A Bunbury mother of three has been recognised for her work in raising awareness of cystic ...
Posted by Michael Wonder on 05 Nov 2017
New hope for families affected by spinal muscular atrophy, with TGA approving drug
4 November 2017 - A drug that can extend the life of children and adults with spinal muscular atrophy (SMA) ...
Posted by Michael Wonder on 27 Sep 2017
NZ behind rest of modern world in medicines funding
21 September 2017 - New Zealand is lagging behind the rest of the modern world when it comes to funding ...
Posted by Michael Wonder on 17 Sep 2017
Cystic fibrosis sufferers put their hope in a change of Government
17 September 2017 - The parents of a 12-year-old boy who suffers from cystic fibrosis say a Labour victory is ...