MPS and Related Diseases Society Australia

10/07/2026

📢 MPS Australia AGM & Future Planning – Your Voice Matters! 📢
As we prepare for our 2026 Annual General Meeting, we're taking the opportunity to reflect on where we've come from and, more importantly, where we're heading as a community.
💙 How do you see the future of MPS Australia? 💙 What would you like MPS Australia to focus on?
Some ideas currently on the table include:
✅ Patient and family support, including psychological wellbeing and peer support
✅ Face-to-face connections, regional gatherings and family conference
✅ Workshops, education sessions and capacity-building opportunities for patients and family members
✅ Education for healthcare professionals to promote a more holistic approach to care
✅ Advocacy for policy changes and improved access to services, treatments and support
✅ Something else? We would love to hear your ideas!
Whether you're a patient, parent, sibling, grandparent, carer, healthcare professional, supporter or volunteer, your experiences and perspectives are important. The future direction or continuation of MPS Australia should be shaped by our community.
📣 Call for Community Feedback
Please share your thoughts in the comments below, send us a private message [email protected] , or join our planning meeting. No idea is too big or too small—we want to hear from everyone.
📅 AGM Planning & Ideas Meeting Tuesday, 28 July 2026 7pm (Melbourne time)
https://calendar.app.google/nDisFp5Yb9HQknkZ6

📅 MPS Australia Annual General Meeting Tuesday, 25 August 2026 7pm

22/09/2024

If anyone is interested in attending please click the link below.

Don’t forget to register for the 2024 Lysosomal Disease Summit!

The 2024 Lysosomal Disease Summit to be held in Melbourne, 18-20 October will be a wonderful opportunity to connect with researchers and clinicians from around our region. The summit covers clinical management, emerging therapies and fundamental research.

View the program and register here: https://lysosomaldiseasesummit.org/agenda/

01/03/2024

01/03/2024

17th International Symposium on MPS and Related Diseases
German version below // deutsche Version siehe unten

Dear interested parties!
Today we would like to share some good news with you!
The MPS Congress 2024 has not only been certified by the Bavarian Medical Association, but also by the European Accreditation Council for Continuing Medical Education (EACCME)!
The Bavarian Medical Association has certified the event with 12 CME points in category B.
And EACCME has even awarded a total of 16.5 CME points!
You can register here if you are not yet registered: https://www.mps2024.com/registration-en
Here you can find the current programme of the event: https://www.mps2024.com/programm-en
We are looking forward to the event with you!

Your MPS organisation team
________________________________________________________________
Liebe Interessentinnen und Interessenten,
heute möchten wir eine frohe Botschaft mit Ihnen teilen!
Der MPS Kongress 2024 ist nicht nur von der Landesärztekammer Bayern, sondern auch von der European Accreditation Council for Continuing Medical Education (EACCME) zertifiziert worden!
Die Landesärztekammer Bayern hat die Veranstaltung mit 12 CME-Punkten in der Kategorie B zertifiziert.
Und von EACCME gibt es sogar insgesamt 16,5 CME-Punkte!
Hier können Sie sich registrieren, falls Sie noch nicht angemeldet sind: https://www.mps2024.com/registration
Hier finden Sie das aktuelle Programm der Veranstaltung: https://www.mps2024.com/programm
Wir freuen uns auf die gemeinsame Veranstaltung!

Ihr MPS Organisations-Team
Contact: [email protected]

10/05/2023

MPS Awareness day is May 15th.
This year we have a beautiful poem about strength and resilience. We all know we need an abundance of these.
“The boy in the blue is just like you,
And every other child and grown up too”.
It has a message of hope and touches on Mental health, disability, acceptance and inclusion. Please take a moment to listen.

The Boy in the Blue is our MPS & Mental Health Awareness campaign, created in honour of our son Ethan, and is aimed at supporting children and young people t...

08/09/2022

Vale Prof Michael Beck he leaves an amazing legacy our heartfelt condolences to his family and patients

Die Nachricht von Prof. Michael Becks Tod hat uns schwer betroffen gemacht. Unser Beileid gilt in allererster Linie seiner Familie.

Zur MPS-Familie gehörte er von Anfang an – als Mitbegründer und langjähriges Vorstandsmitglied der Gesellschaft für MPS e.V. legte er 1986 den Grundstein für das, was wir heute sind. Michael Beck war eine Kapazität auf dem Gebiet der lysosomalen Speichererkrankungen – von allen gemocht und respektiert. Er beeindruckte durch sein Wissen und seine unermüdliche Bereitschaft dieses weiterzugeben.
So viele MPS-Familien begleitete er sein Leben lang. Dass dabei das Wohl seiner Patienten immer an erster Stelle stand, war für ihn eine Selbstverständlichkeit – für uns aber eine Besonderheit.

Danke für das, was du für uns getan hast und was du für uns warst. Wir werden dich vermissen und uns für immer gerne an dich erinnern.

25/06/2022

AGM ANNOUNCEMENT

The AGM for the Mucopolysaccharide and Related Diseases Society Australia Pty Ltd. will be held on Saturday 9th July at 3pm.

Documentation was sent to members via email on 9th June. If you are a member and haven’t received the information or are yet to RSVP, please send an email to [email protected] or send a direct message to this page.

Thanks

Heather
(Board Secretary)

13/05/2022

MAY 15th is International MPS Awareness day

02/07/2021

Members and Friends of MPS

The 16th International MPS Symposium is just weeks away! Running from July 23-25 this Symposium will be a VIRTUAL event that you can participate in from the comfort of home. The best part - if you register BEFORE July 11th it's completely FREE to attend!

Here are just a few reasons why you should register to attend NOW!

Preview of the Event Platform & How it will work;
The platform will be open to the public two days before the start of the event.
As of today we have over 600 people registered, of which 280 are families.
This us a unique opportunity for families from all over the world to participate in an international symposium from the comfort of their home and FREE of charge!
Not only will they view live over 60 presentations from top notch speakers, they will be able to access all the webcast afterwards for two months.
The event platform also includes: information about the 60+ speakers, access to the exhibition pavilion, Memorial hall, Networking Area, Poster Area, Private messaging with other attendees,….
Registration is only possible before the beginning of the event, afterwards it wont be possible and they will miss out on all that information which will be available for two full months until the end of September.


Children and Young program
Check out this video to see why you should join in the fun!
: https://vimeo.com/user120449551/download/569318979/60f846affb
Children need to register in order to get access to all the activities that are being planned!
Registration is FREE for children.


Memorial Hall
We have created a Memorial hall to honour the memory of family members, friends & relatives that we would like to remember and honour.
It will resemble a sky and each star will be a message which will display when you get over with your mouse.
To leave your own Memorial Message in the sky follow this link: https://docs.google.com/forms/d/e/1FAIpQLSdaa-pqoVB4Zfx1oNNZfKxRXoqLDqad25mtn6E9wYy3q06KuA/viewform
Deadline to receive the messages is: July 16

To register visit www.mps2021.com NOW!!!!

We have not forgotten how important it is for children to attend this meeting. For that reason, we will have an Adventure Center with all sorts of fun and dynamic…