Porphyria Association Inc. Australia
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International Patient Day and the International Congress of Porphyrins and Porphryias
In 2017, Jessica, Sean and Amy traveled to Bordeaux, France to attend the International Porphyria Patient Day and the International Congress of Porphyrins and Porphyrias. 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 porphyria patient advocacy organisations from all over the globe as well as world renowned experts in porphyria. The first event of the conference was the International Porphyria Patient Day where we heard updates from each of the patient groups on the status of their organisation and what their major projects were. The majority of the patient advocacy groups had been lobbying their respective governments to allow access to Scenesse® (afamelanotide 16mg) for the treatment of cutaneous porphyria. Scenesse® had been approved by the European Medical Association and was in the final stages of being approved by the Food and Drug Administration. In collaboration with Clinuvel Pharmaceuticals, approval by both of these bodies allows us to start lobbying the Australian Government to allow Australians access to this life changing drug. Another notable highlight of the patient day was the expert panel, where clinicians and scientists answered questions put to them by patients. The last three days of the conference were focused on the scientific and medical 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.
Porphyria Association Inc. General Meetings Hosted every few months at the Royal Children's Hospital, 50 Flemington Road, Parkville, Victoria. Members who live interstate or cannot travel to Parkville can have their say via phone or video link. Please contact us for the date of our next meeting via phone, email or the Contact Us page on this website.
New Website 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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