MPS and Related Diseases Conference 9-12 April 2015

Camp Manyung Mt Eliza Victoria, 9-12 April 2015

Enquiries: 1800 045 515

Brochure

Delegate Registration Form

Carer Registration Form

Children’s Registration Form

Professional Registration Form

Make one time online payment via Paypal
Credit Card or Paypal acccepted. No Paypal account required for Credit Card.

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Amount:

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Kaitie the Courageous

Written by Amy Russo - Illustrations by Karen ErasmusPlease join the Australian MPS Society to launch ‘Kaitie the Courageous’ a book that tells the story of brave nine year old South Australian girl, Kaitie, who is living with Mucopolysaccharidosis type 1 - Hurler syndrome (MPS1H).

MPS is a very rare and debilitating genetic disorder, but one that is potentially fatal. Kaitie’s story spotlights the experiences of Australian families impacted by MPS and the challenges and inspiration for those with rare diseases to live life to the full. 

To launch ‘Kaitie the Courageous’ you will hear from Kaitie’s mother, Kimberlee Francis, as well as experts in MPS.

Date: Wednesday May 7, 2014
Time: 10:30am for presentations and morning tea
Location: The Women’s and Children’s Hospital in Adelaide
RSVP: 5 May, 2014.
Contact: Rachel Stanton,
02 8281 3268
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Download flyer (pdf)

Download book order purchase form (pdf)

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MPS Family Information Workshop at the RCH in Melbourne - March 18th 2014

Speakers:

• Guest Speaker: Dr. Rolando Cimaz - ‘Musculoskeletal Problems in MPS’
• Very Special Kids – The importance of respite
• Carers VIC – Self care and carer well being

Morning tea and Lunch will be provided

Please join us on:
Tuesday 18th of March 2014 
9:30am -12:30pm

Venue:
Royal Children’s Hospital. 50 Flemington Rd. Parkville.
Meet at the ground floor of the Murdoch Childrens Research Institute
reception desk

RSVP: This email address is being protected from spambots. You need JavaScript enabled to view it.

View the PDF for more information

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MPS Awareness Day

MPS Awareness DayThe Australian MPS Society invites you to help us celebrate MPS Awareness Day on 15 May.

The International MPS Network describes the purpose of International MPS Day as follows:

International MPS Day began as a way to honour everyone in the MPS Community, to recognize, remember and rejoice in each other.

On International MPS Day we:

• Remember all the children and adults who suffer from MPS diseases.
• Think about the children we have lost.
• Think about the doctors and scientists who are dedicated to finding a cure for MPS.
• Remember each other and be thankful for the strength and support we both give and receive.

The Australian MPS Society encourages all our members and affected families and friends and all professionals involved in the treatment of MPS and Related Diseases to use the opportunity offered by MPS Awareness Day, 15 May to tell everyone they know about MPS and to increase public awareness of MPS.

Please enjoy this selection of MPS Family Story videos which our Australian and International MPS Family members have put together to tell their story!

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