Porphyria Association Inc. in Melbourne, Victoria, Australia | Non-profit organisation

Porphyria Association Inc.

Locality: Melbourne, Victoria, Australia

Phone: +61 423 848 177

Add/Update information

Reviews

Tags

• Non-profit organisation

24.01.2022 This research survey is closing in the next week. Please help represent the picture of acute porphyria in Australia in this global study. Kantar and the Australian Porphyria Association Inc invite you to participate in the Porphyria Worldwide Patient Experience Research (POWER) study. Your input is critical to increasing awareness and understanding of AHP and the needs of patients living with this condition. The survey will take approximately 30 minutes to complete and you ...will be allowed to stop at any point of the survey and resume at a later point of time where you have left off. It will not require you to download anything to your computer. Please note that this study is highly confidential. Taking screenshots, sharing the material with others or any action that would inform others of the study content is strictly prohibited. https://survey.euro.confirmit.com/wix/p151984637976.aspx... We appreciate your interest and participation. See more

17.01.2022 Professor Edward Janus and Dr Ainslie Senz join Australian Porphryia Assocation President Jessica Betterridge in a discussion about the health system and how patients with porphryia can navigate it.

10.01.2022 This research survey has been extended for an extra week this is the last chance for us to get our numbers up. Please help represent the picture of acute porphyria in Australia in this global study. Kantar and the Australian Porphyria Association Inc invite you to participate in the Porphyria Worldwide Patient Experience Research (POWER) study. Your input is critical to increasing awareness and understanding of AHP and the needs of patients living with this condition. https...://survey.euro.confirmit.com/wix/p151984637976.aspx... We appreciate your interest and participation. See more

10.01.2022 Porphyria Awarenss is so important for the understanding of our rare disease. By raising awareness we destigmatise the condition and allow our friends and family to gain an awareness of what we go through each and everyday. Please pick your favourite video from the last few months and share it on your page to raise awareness and tag us with your personal stories. We would love to hear more from you please join us on Saturday at the Get Together Zoom session.

08.01.2022 Hi Everyone, I apologise for the technical difficulties the zoom session has just started. Come join!