Providing $400,000 life-saving drug to Australian kids with rare disease

The Turnbull Government will provide a life-saving treatment to Australian patients who have a rare medical condition known as Morquio A Syndrome, at no cost.
Vimizim® (elosulfase alfa) will be available under the Life Saving Drugs Program from 1 August.

Media Release

MPS Awareness Day 15 May 2017

MPS Awareness Day Poster Download

INTERNATIONAL MPS AWARENESS DAY

Research Support Hope

Funds raised will support research into MPS and Related Diseases
The Australian MPS Society is a non profit organisation formed by parents, relatives and friends of those suffering from a range of rare genetic disorders known collectively as the mucopolysaccharide (or MPS) diseases.

mpssociety.org.au This email address is being protected from spambots. You need JavaScript enabled to view it.

This email address is being protected from spambots. You need JavaScript enabled to view it.">MAY15
MPS Himalayan Challenge 2017

In April 2017 a group of trekkers will set off on a 21 day adventure and challenge of a lifetime to climb Island Peak in the Himalayas. Each participant has committed to raise funds to support MPS Australia and the Rare Disease Fund at The Children's Hospital at Westmead.

To directly support this event donations can be directed directly to:
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MPS Conference July 7-9 2017 Sea World Gold Coast

Aiming High for MPS

MPS and Related Diseases Society 15th National Conference

7-9 July 2017

Gold Coast QLD

We welcome you to join us as we celebrate our 15th National Conference. The line up for the weekend will provide the latest information in clinical management and treatment, research and most importantly opportunities to network with experts in the MPS community, including clinicians, scientists, health care professionals and researchers. As well as professional presentations there will be a variety of talks reflecting personal experiences, workshops and opportunities for participants to reflect and share knowledge in a casual and supportive environment. The venue may have changed but Sea World Resort is sure to offer a fun and interactive conference for everyone. We look forward to seeing you there!

Vanessa Ede-Scott Operations Manager

THE VENUE

Sea World Resort is located on the Broadwater Gold Coast and offers comfortable family style accomodation and modern conference rooms with free wifi. Residential delegates have access to amazing theme park discounts as well. The new resort lobby is spacious and will provide us plenty of space for informal catch ups.

ADDRESS

Sea World Dr, Main Beach, Gold Coast, Queensland 4217 Australia

ACCOMMODATION

Rooms are available with walk in and separate showers, these will be given as a priority to those with mobility needs. These rooms are large and have a separate bedroom. Family rooms and interconnecting rooms are also available, please note these rooms have a shower over the bath. • You are able to stay at the venue 3 days before and 3 days after the conference at the discounted corporate rate. These additional nights are to be paid direct to the hotel on arrival. Please indicate if you are taking up this offer on your registration form so the room can be held for you. Please note you are responsible for all room charges.

CHILDREN AND VULNERABLE ADULTS - ACTIVITY PROGRAM

Children with MPS and Related Diseases and their siblings will have their own supervised program. A visit to Sea World, fun characters dancing and more. Please let us know if you already have an annual Sea World pass. Those with complex needs will have a modified program. Evening activities will be available for subject to carers and volunteers • We expect some families will bring their own carers as this is often the best solution however we welcome new volunteers as well. If you are bringing a carer a Blue Card (QLD working with Children check) is necessary so please let us know so we can help you arrange this. Forms are available to download https://www.bluecard.qld.gov.au/applications/applications It takes 28 days for you card to come please apply ASAP, there is no fee. • If you or your child has complex care needs please get in touch to discuss needs and resources required.

SPEAKERS

Dr Jim McGill , Dr David Ketteridge, Dr Kim Hemsley's Adelaide team and Anita Inwood are working closely with the Society to provide informative speakers

SPONSORS AND SUPPORT

Thank you to our Sponsors and donors who support our education program

For more information please see our information and registration pack (PDF)

 

MPS Family Seminar - 31 October 2016

firtsMPS Update by Prof Frits Wijburg
MPS & planning for the NDIS Q&A

Date: Monday 31 October 2016

Time: 12.30-1.45pm 
Lunch provided

Venue: Conference Room 6, Level 2, Sydney Children's Hospital, High St, Randwick

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

SPEAKER -Prof Frits Wijburg, Academic Medical Center, Amsterdam. CHAIR –DrCarolyn Ellaway

Prof Wijburgchairs the department of pediatric metabolic diseases at the Academic Medical Center (AMC) in Amsterdam. He has long-standing experience in the diagnosis, management, and therapy of patients with inherited metabolic diseases with a focus on lysosomal storage disorders.

Download Printable Flyer 

Supporting MPS Awareness Day - 14 May 2016

Melbourne’s home of Motown , Soul & Northern Soul

Saturday 14th May 2016

Join us for a fun night for all adults. All money raised will be donated to the MPS & Related Diseases Society.

Melbourne’s home of Motown and Northern Soul is a monthly event attended and DJ’s by Andrew James. Andy has two boys affected with MPS IIIA and this fundraiser is to support MPS & Related Diseases Awareness Day.

Please bring your friends and come along. What a great way to catch up with everyone. There will be lots of prizes, raffles & MPS merchandise, along with finger food and great music. 

So wear your dancing shoes! 

Drinks at bar prices

MPS EVENT: SATURDAY 14TH MAY

STARTING: 7.30-MIDNIGHT

PRICE: $5 ENTRY

WHERE: BAYSWATER LAWN BOWLS CLUB

43 PHYLLIS STREET
BAYSWATER, VIC

Any questions please email : This email address is being protected from spambots. You need JavaScript enabled to view it. or call 1800 045 515

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