Porphyria Association Morning Tea

Time: 10:00am-11:00am

Date: Monday April 22nd, 2013

Venue: Meetig Room 2 (upstairs on the left)
The Nerve Centre
54 Railway rd, Blackburn
Victoria, 3130

500m from Blackburn Station (Lilydale or Belgrave Lines)
Parking available off Solwood Lane behind Nerve Centre

If you would like to receive an SMS reminder the day before the meeting, please call (03) 9845 2737 and leave a message with your name and mobile phone number.

Porphyria Association Morning Tea

Time: 10:00am-11:00am

Date: February 22nd, 2013

Venue: Betty Cuthbert Room
The Nerve Centre
54 Railway rd, Blackburn
Victoria, 3130

500m from Blackburn Station (Lilydale or Belgrave Lines)
Parking available off Solwood Lane behind Nerve Centre

RSVP: February 18th, 2013 to (03) 9845 2737

Leading question: What is one thing you would pass on to somebody just diagnosed?

Annual General Meeting for 2012 - NOVEMBER 27th

Time: 1:00pm for a 1:30pm start. All are welcome!

Date: November 27th, 2012

Venue: Betty Cuthbert Room
The Nerve Centre
54 Railway rd, Blackburn
Victoria, 3130

500m from Blackburn Station (Lilydale or Belgrave Lines)
Parking available off Solwood Lane behind the Nerve Centre

Education Topic:

Navigating the Safe and Unsafe Drugs Lists and Databases

Note: The AGM will be preceded by a morning tea support meeting for people living with Porphyria and their family members.

For more details, see Latest News.

Porphyria Association Morning Tea

Time: 11:00am-12:00pm
(Annual General Meeting to follow at 1:00pm)

Date: November 27th, 2012

Venue: Betty Cuthbert Room
The Nerve Centre
54 Railway rd, Blackburn
Victoria, 3130

RSVP: November 22nd, 2012 to (03) 9845 2737

Leading question:

What is one tip you would pass on to someone else just diagnosed with Porphyria?

For more details, see Latest News.

General Meeting - April 2012
Tuesday, 17 July 2012 - 1:00 pm (Note the time!)

Education Topic.... Mini workshop: ‘rewriting the text books?’
Come and help us find a hundred words describing Porphyria that are more up to date than the current text books.

How can we represent Porphyria as something that, if diagnosed early and treated promptly, patients could potential lead a full life?

For more details, see Latest News.

General Meeting - April 2012
Tuesday, 17 April 2012 - 1:00 pm

Education Topic: "Using and explaining www.drugs-porphyria.org"

What alternatives are there to unsafe drugs?
Demonstration by Anna and a discussion chaired by our president, Christine Williams.

For more details, see Latest News.

General Meeting
Tuesday, 17 January 2012 - 2:30pm

Education Topic: "How do we talk to doctors?"

A discussion chaired by our president, Christine Williams

• Doctors don't normally get a lot of training in Porphyria and much of the management and treatment for acute Porphyria is “counter intuitive” to typical hospital and medical routines.
• For a small example we can’t have Maxolon, the 1st response drug for excess vomiting. Also, Porphyria imitates so many other conditions and illnesses.
• How then can we convey the seriousness of our condition to them when it looks like everything else and doesn't behave like anything else?

For more details, see Latest News.

Site links in the Safe/Unsafe drugs section have been updated to link properly to updated or moved site references.

MINI BULLETIN

1. Genetic testing is now available for people with a family member who has biochemically proven Porphyria. See our HOW TO TEST page.
   
   
2. Copies of the Swedish Porphyria Association booklet “Patient and Doctor’s Guide to medication in Acute Porphyria” can be ordered direct from porfyri@swipnet.se OR porphyricentrum@karolinska.se

Annual General Meeting

Thursday, 25 August 2011 at 2:30pm

Education Topic:
ACCESSING INFORMATION ON PORPHYRIA

Meeting to be held at The Nerve Centre
54 Railway Road, Blackburn, Vic

Tea & coffee provided, a healthy lunch or snacks are available for purchasing at the Hub Café, in the Nerve Centre, before the meeting.

Enquiries:
Nerve Centre: (03) 9845 2737, (m): 0423 701 443
e-mail: porphyria@msaustralia.org.au

Interstate & country members can have their say by post, phone or e-mail. Conference calling is possible if it is set up before hand.

AGENDA

1. Apologies and Introductions to new members and guests
2. Minutes of last annual general meeting 2009
3. Matters arising from Minutes
4. President’s report
5. Treasurer’s report
6. Election of committee and office bearers.
7. Any other business
8. Education topic and discussion. “Accessing information about Porphyria”

To comply with the rules of the Porphyria Association Incorporated, members need to have completed a membership form and paid $5.00 in order to be eligible to vote at meetings. Voting can be done by proxy. For enquiries please call The Porphyria Association Inc on (03) 9845 2737 and leave a message for a return call, or email porphyria@msaustralia.org.au.

Important information for Australians.

The following is a statement from the RPA genetics team. To clarify, as we understand it “a known diagnosis” in usual practice would mean, someone in the family with a biochemically confirmed test result for any inherited Porphyria (see our “Why test for Porphyria” page). Another point is that isolating the first family gene can take six months or so.

Porphyria Website Information
Genetic testing is available for individuals with a known diagnosis of an inherited porphyria and their families.

Genetic testing is performed in a stepwise progression, firstly on an affected individual and then if a gene mutation is identified (97% of the time) genetic testing can be offered to at-risk relatives. Children, siblings and extended relatives can then find out whether they have inherited porphyria and take appropriate preventative measures. Although only about one third of people with Porphyria will develop symptoms of the condition they could still pass it on to their children who may or may not suffer from symptoms. There is a clear clinical benefit in knowing whether you have inherited Porphyria or not as avoidance of trigger factors is relatively easy when forewarned.

Genetic testing can be done through Genetic Clinics, which operate in most states of Australia and internationally. A list of Australian Genetic Clinics is available at http://www.genetics.com.au. To see a geneticist you will require a referral letter from your family doctor.

If you have any further questions genetic testing please feel free to contact the genetics team at Royal Prince Alfred Hospital on 02 9515 5062.

General Meeting
Tuesday 18th May 2010
3.30pm
The Nerve Centre
54 Railway Road
Blackburn VIC

Come and meet the new committee!
General business matters of the Porphyria Association will be discussed.
Tea and coffee provided
Enquiries: phone: (03) 9845 2737 or email: Porphyria@mssociety.com.au
If you are unable to attend the meeting in person, you can still have your say by post, phone or email

Victoria: Medical Cooling Concession

This is a Victorian Government concession to make electricity bills more affordable for low income Victorians who have multiple sclerosis and other medical conditions with heat intolerance; which may include Porphyria.

You can download the flyer here, or phone the Concessions Information Line on 1800 658 521.

General Meeting : Wednesday 5 November 2008 - 1:30pm

Investing a New Committee

People want the Porphyria Association Inc to continue and, due to some solid campaigning by our administration officer, we have a strong committee to come on board!

You can download details of the meeting in as a Word Document (in a zip file) or as an Acrobat Reader PDF file.

Annual General Meeting: Tuesday 30th Sept 2008 @ 1.30pm

Including vital discussions about the future of the Porphyria Association.

Full details: HTML (view online) | Word document (needs to be unzipped) | PDF format

Meeting to be held at
The Nerve Centre
54 Railway Road Blackburn, Vic
Tea, coffee provided
Enquiries: (03) 9845 2737, (m): 0408 337 173

Website Updates

Extra links added in the Contacts and Links sections for more support groups in Australia and internationally.

Porphyria Association General Meeting Tuesday, 22 April 2008 1:30pm

Education Topic: Writing Workshop 'Telling Our Stories' We have been told the best way to improve knowledge of Porphyria is to tell our stories. We will run a short workshop of techniques to get you started on writing your story for beginner writers to experienced writers. Anyone who wants to send us a story, please do. All stories are welcomed - single events or long sagas. (NB Only tell what you are comfortable with.)

Meeting to be held at
The Nerve Centre
54 Railway Road Blackburn, Vic
Tea, coffee provided
Enquiries: (03) 9845 2737, (m): 0408 337 173

Read more here or download the flyer.

Genetic Support Awareness Week
Sunday 1st to Saturday 6th July 2007

Genetic Support Awareness Week raises awareness of genetic conditions and what it means to be affected by a genetic condition. It’s also an opportunity to meet others “in the same boat”, celebrate the joys and work together to overcome the challenges.

More info at the GSNV (Genetic Support Network of Victoria) website.

AMaPo: FIRST INTERNATIONAL PORPHYRIA PATIENTS' MEETING!

26th & 27th October in Rome, Italy.

More information at: www.amapo.it/rome2006/

Quarterly General Meeting on
Saturday, 25th March 2006

Click here for more info.