Race against time

Support Caleb Faria who is suffering with MPSII Hunter Syndrome.

www.calebfaria.com

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Our MPS Story

The story of a family whose oldest son has Sanfilippo Syndrome MPSIIIA

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For Your Diary - Events and Notable Dates

DATE and TIME EVENT LOCATION CONTACT FOR FURTHER INFORMATION
From 1 January Membership Renewals Due Membership Form This email address is being protected from spambots. You need JavaScript enabled to view it. 
15 May International MPS Awareness Day   This email address is being protected from spambots. You need JavaScript enabled to view it.
29 Sept 2013 at 10.30am Qld MPS BBQ - Dr Jim McGill and Anita will be attending Lawnton, 4501 This email address is being protected from spambots. You need JavaScript enabled to view it.
1 Nov 2013 Submissions due for next Linking Hand   This email address is being protected from spambots. You need JavaScript enabled to view it.
13-17 Aug 2014 13th International Symposium on Mucopolysaccharidoses and Related Diseases Brazil  
28 Feburary  Rare Disease Day    
18 March 2014 Family information Day at the RCH in Melbourne with guest speaker- Dr Rolando Cimaz RCH in Melbourne  

Please email the This email address is being protected from spambots. You need JavaScript enabled to view it. with any additions to this list.

Please email the This email address is being protected from spambots. You need JavaScript enabled to view it. with any changes to addresses or contact details.

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International MPS Network

int mps_net

The MPS International Network is the official body of the patient associations representing MPS and MPS Societies at a European and global level. The aims of the Network are:

  • To act as an independent forum for MPS Societies and relevant patient associations at a European and global level, including supporting each other and emerging new patient organisations representing MPS.
  • To promote the well-being of those affected by Mucopolysaccharide and related Lysosomal diseases through the best practices of clinical diagnosis, management and treatment.
  • To promote public and professional awareness of Mucopolysaccharide and related Lysosomal diseases.
  • To oversee the nominations for an MPS Society or relevant patient association to host the International Symposium on Mucopolysaccharide Diseases and to preside over the decision making, forward planning and reporting.
  • To identify research priorities and potential collaborations and where appropriate, work in partnership with the academic community and the pharmaceutical industry.
  • To develop relationships and partnerships with other Lysosomal Storage Disease Groups for the purposes of collaboration and joint learning.

Please have a look at their new website at http://www.impsn.org/ for more information

 

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MPS Society Now on Facebook

You can now find the Australian MPS Society on Facebook*.   Thanks to Samantha Prior for creating this great site.

http://www.facebook.com/group.php?gid=113982641991849&;ref=ts

Please use the site to chat with other MPS families and to share news and views.

*If you are not already a member of Facebook, it is free to join - just go to the Facebook site and create your own page - you may put as much or as little information up as you wish and remember to go into the privacy settings and make sure you have set them to the highest levels to avoid any possibility of identity theft and the like.  Your use of Facebook is at your own risk.  The Australian MPS Society takes no responsibility for any person's use of Facebook or any social networking site

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