Porphyria Association Inc. - Australia

We had a fantastic time learning about all the new advances, protocols and treatments for Porphyria at the International Congress of Porphryins and Porphyria’s (ICPP 2024) this week. It was great to connect with all our international friends from across the world to be able to learn and grow from each other. We look forward to being able to share what we learnt with the Australian and New Zealand Porphyria Community

Hi, my name is Andrew. My family has been affected by Acute Intermittent Porphyria. I'm so grateful for all of the support, guidance and expertise provided by the Australian Porphyria Association and the broader community. Without this support our path would have, and would continue to be, much more difficult and lonely.

I am looking forward to working with the community to keep improving access to information and support for families affected by Porphyria.

Today is Global Porphryia Day. We take this opportunity to acknowledge the ups and downs this disease can make people experience. We know its not easy sometimes but that's why we have this community to help get us through. Please take the opportunity to share your story to raise awareness for Porphyria. We look forward to hearing your stories.

Hi my name is Jessica, I have HCP. It’s been a long journey to get where I am today with many challenges. I am grateful for the opportunities that I have had to participate in clinical trials as it has given me the possibility to now live a much healthier life.

I love giving back to the community that has given so much to me and look forward to continue to volunteer with the association.

My name is James, and I’ve been involved in the Australian Porphyria community since 2020 as a volunteer. In this time, I have met so many great people affected by porphyria and have been inspired by their resilience and attitude in the face of rare disease. Together, let’s continue to raise awareness and continue to support all those in the porphyria community!

Join us everyday this week where we will celebrate the amazing Porphyria Community in Australia for Global Porphyria Day 2024.

Today, on Rare Disease Day 2024, we are celebrating the Porphyria and wider rare disease community.

We are very lucky to represent a community that inspires us each day with their resilience and strength. We are grateful to everyone in who has given their time to share their story and for all those who continue to advocate for themselves, their loved ones, and all those with rare disease.

Lets use today to continue to raise awareness and acknowledge all those living with rare disease!

Today is Rare Disease Day 2023. As people who live, care and love someone with Porphyria today is important in creating awareness about the condition and it's effects on our lives.

Please use this post to share your experience with the condition and share on your social media using the Rare Disease Day social media banners. https://www.rarediseaseday.org/downloads/

It is international Rare Disease Day today and we thought we would take the opportunity to launch a project that has been many months in the making, a new look for our organisation.

Our new logo acknowledges our past and looks to where we as an organisation want to go in our future. We hope to further strive to provide awareness, support and education to the wider porphyria community and that our new logo and website platform helps in achieving these goals.

Our web address is the same, however please visit to find new and improved content.

www.porphyria-australia.org

We hope that improved information will help in breaking down barriers and provides awareness about the porphyria community and this is especially important to highlight on Rare Disease Day.

www.porphyria-australia.org

We had a great Annual General Meeting last week. We discussed the year that has been and our goals for 2022.

Thank you to all that attended. We look forward to the next year where will continue to work on our advocacy, awareness and educations goals.

Minutes are available on request.

Hi Everyone please join us now for the 2021 AGM. The meeting is on Zoom at the link below.

https://us06web.zoom.us/j/81389254225?pwd=VERVZkdIekJ3NnVqUk1CYllwV214QT09

Join our Cloud HD Video Meeting Zoom is the leader in modern enterprise video communications, with an easy, reliable cloud platform for video and audio conferencing, chat, and webinars across mobile, desktop, and room systems. Zoom Rooms is the original software-based conference room solution used around the world in board, confer...

Hi Everyone, it is that time of year, we will soon be hosting our 2021 Porphyria Association Annual Meeting.

Time: 7:00pm - 8:00pm (AEDT)
Date: Thursday, November 18th, 2021

Due to the ongoing COVID-19 pandemic, the 2021 AGM will be held digitally over ZOOM. The call will start at 7:00pm AEDT (Melbourne/Sydney time). Please download the zoom app and test your connection prior to the meeting. The executive board will be on the call 15 minutes before the call starts. If you are having any connection difficulties, please contact 0423 848 177.

The call will use video, however if there are any unexpected internet connection issues we will convert to voice only. We ask that while the meeting is in progress, that you mute your microphone to prevent any background noise. If you have any comments, questions or contributions to make during the meeting, please use the raise hand or chat functions.

We will send out the zoom link and agenda a week before the meeting.

If you would like to receive an SMS reminder the day before the meeting, please call and leave a message with your name and phone number.

Please RSVP to this event to either [email protected] or 0423 848 177

We look forward to having you join us.