Porphyria Association Inc.

(incorporating PEGS established 1987)

Quarterly General Meeting

Saturday, 25th March 2006

11am

at

The Nerve Centre

54 Railway Road

Blackburn

Training room

Education Topic

What can be done for people with Porphyria?

Where do people with Porphyria go to get help?

Guests: Professor Edward Janus, Metabolic Physician

Dr Mac Gardner, Consultant Clinical Geneticist

v Have you wanted to ‘tell them what its like’ to live with Porphyria. Have you felt like its banging your head against a brick wall?

v A forum to say what works and what doesn’t.

v A forum for asking: “Where do I go, what do I do?” “How do we get treatment?” “How can we organise for haem-arginate to be available when needed?” “Where do we go where we know that we are going to be listened to? Where to go so that we know that things will be put in motion?”

v What can the Porphyria Association advise people to do? What steps to take?

v We may not work out all the answers but it’s a start.

All are welcome to meet these very approachable doctors

Panel starts at 11:15am

Tea, coffee provided BYO lunch.

Please wear no perfumes in consideration of those with sensitivities.

Enquiries:

Nerve Centre: (03)9845 2737, (m): 0408 337 173

e-mail: porphyria@mssociety.com.au

Interstate members can have their say by e-mail, post or telephone.