Blog
RSS FeedPosted by Michael Wonder on 01 May 2017
Cystic fibrosis 'miracle' drug among Turnbull government's $310 million PBS listing
1 May 2017 - A cystic fibrosis "miracle" drug that would normally cost patients $300,000 a year and a breakthrough ...
Posted by Michael Wonder on 12 Apr 2017
Patented Medicine Prices Review Board will hear closing arguments in the matter of the price of Soliris
12 April 2017 - Closing arguments in the matter of the price of the patented medicine Soliris will be heard from ...
Posted by Michael Wonder on 12 Apr 2017
Why drug appraisal methods need to take into account treatments for rare diseases
12 April 2017 - The UK government needs to adapt its drug and technology appraisal methods to prevent patients with rare ...
Posted by Michael Wonder on 11 Apr 2017
Why drugs like these for ‘orphan’ diseases are a booming business with colossal costs for patients
8 April 2017 - Powerful new pharmaceuticals are promising to change the lives of those who suffer from rare diseases. But ...
Posted by Michael Wonder on 03 Apr 2017
Stan Zemanek’s widow Marcella calls for more funding into rare cancers
2 April 2017 - The widow of radio broadcaster Stan Zemanek has made an emotional plea to the federal government ...
Posted by Michael Wonder on 29 Mar 2017
Charities unite to oppose NICE rare disease rules
28 March 2017 - Nearly 200 rare disease patient groups have come together to call on NICE and NHS England ...
Posted by Michael Wonder on 27 Mar 2017
Should we pay more to treat rare diseases?
22 March 2017 - The UK’s public health watchdog is pressing ahead with plans to introduce a “dynamic upper limit” ...
Posted by Michael Wonder on 26 Mar 2017
Rare cancer drug added to PBS
25 March 2017 - A drug used to treat a rare form of cancer now widely available through the national ...
Posted by Michael Wonder on 24 Mar 2017
Hope of B.C. coverage for life-saving cystic fibrosis drug dashed
23 March 2017 - 'It's about dollars,' says father of 16-year-old who claims son's life was changed by access to the ...
Posted by Michael Wonder on 17 Mar 2017
Cystic fibrosis advocates push for affordable access to Orkambi only drug available in Australia
17 March 2017 - Cystic fibrosis patients should be given immediate and free access to the only drug available in ...
Posted by Michael Wonder on 15 Mar 2017
Sanofi displeased with NICE decision on rare disease drug
14 March 2017 - French drug major Sanofi and its specialty care global business unit, Sanofi Genzyme, say they are ...
Posted by Michael Wonder on 12 Mar 2017
The tragedy of Aviana
12 March 2017 - It’s the stuff of every parent’s nightmare: a rare genetic disorder means Bethan and Johnny’s perfect baby ...
Posted by Michael Wonder on 10 Mar 2017
Patients with rare cancers fight for more research, funding, support
9 March 2017 - As a teenager, Kelly Cartwright dreamed of playing netball for Australia, but a niggling pain in ...
Posted by Michael Wonder on 25 Feb 2017
Without rare-disease policy, patients in Canada face steep costs for drugs
24 February 2017 - Alex Chiabai has been living with the effects of Duchenne muscular dystrophy, a genetic disease that weakens ...
Posted by Michael Wonder on 15 Feb 2017
NICE rejects Alexion’s rare disease therapy Kanuma
15 February 2017 - NICE has published a final evaluation determination rejecting the use of Alexion's Kanuma to treat infants, ...