Porphyria Association Inc. Australia
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International Patient Day / International Congress of Porphyrins and Porphryia's September 3rd 2017
In mid June Jessica, Sean and Amy travelled to Bordeaux, France to attend the International Congress of Porphyrins and Porphyrias and the International Porphyria Patient Day. This conference is held every two years and this was the fourth conference that our organisation has attended. We had the privilege of networking with other patient advocacy organisations from all over the world as well as world renowned experts in Porphyria The first event of the conference was the International Porphyria Patient Day where we were updated by each of the patient groups on the status of their organisation and what their major projects are at the present time. The majority of the patient advocacy groups have been lobbying their respective governments to allow access to Scenesse® (afamelanotide 16mg). Scenesse® has been approved by the EMA (European Medical Association) and is in the final stages of being approved by the FDA (Food and Drug Administration). This will allow our organisation in collaboration with Clinuvel Pharmaceuticals to start lobbying the Australian Government to allow Australians access to this life changing drug. Other notable highlights of the patient day were the three expert panels who answered the questions put to them by patients. The last 3 days of the conference were focused on the scientific and clinical aspects of porphyria. We learnt a lot about the innovative research that is being conducted by passionate and talented researchers and clinicians all over the world. We were impressed by the international research collaborations and cooperation by everyone involved in the porphyria community. One of the highlights of the scientific program included the release of the first Givosiran clinical trial results, which are very promising for patients with Acute Hepatic Porphyria. The report can be read here: http://investors.alnylam.com/releasedetail.cfm?ReleaseID=1031238 We were also able to strengthen relationships with new physicians from both Australia and New Zealand and the pharmaceutical companies that help support the porphyria community.
General Meeting July 24th 2017
New Website June 15th 2017 After ten years, we have launched a new website. This sees the Porphyria Association move into a new era, giving the organization a re-energized look. The whole team thanks the members who have given us feedback regarding the old and new website. We also acknowledge the porphyria specialists who have taken the time to update all relevant medical information. We will continue to update the information about the specific porphryia's in the coming months.
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