MPS and Related Diseases Society Australia

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: info@mps2024.de

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 secretary.ausmps@gmail.com 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…

23/06/2021

It is with excitement we announce the newly elected Board of Directors for the MPS Society after a long and somewhat difficult AGM process.

Our new President is Andrew Cu***ng. Our new Treasurer is Sylvia Webb. Our new Secretary is Heather Anderson. Our fourth Board member is Juanita Van Dam. I am sure you will all join us in congratulating each of them on their roles.

Enormous thanks goes out to Ann Scott for her many years of contributions to the Society as a member of the Board, Committee and Conference steering committees. Vanessa Ede-Scott who also leaves us as Operations Manager and long-time supporter of the Society on the Board and Conference steering committees. And finally it is time for me to move on to other pursuits. We will all remain involved in supporting the new team, and we look forward to seeing the direction they all drive the Society to in the future.

Now is the time for members to begin to engage and share their ideas and thoughts about changes. In the coming weeks and months you will receive questionnaires and have the opportunity to make suggestions about where the MPS Society will head. It is vital that you engage with this process to ensure the Society of the future fits the mould of what's needed for our families, the future of trials and treatments and how Govt engages with our rare disease community in Australia and globally with our international partnerships.

Thank you for the support so far and we look forward to seeing where things evolve to from here.

04/06/2021

Sharing our COVID-19 Vaccine webinar June 8th at 11am (AEST)hosted by GSNV
At the GSNV we are hosting A/Prof Margie Danchin, leader of the Vaccine Uptake Group, MCRI, in an online free webinar for our community. Margie is an expert in vaccine research focusing mainly on vaccine confidence, acceptance and uptake.

This is an opportunity to ask questions about the COVID-19 vaccine health issues in the immediate context of our communities.
The session will cover:

COVID-19 vaccine overview including how vaccines are developed and the approval process for all vaccines in Australia
Strategies for empowering vaccine champions in your community and building trust
Discussing COVID-19 vaccines with people who have questions or who may have concerns about the COVID-19 vaccine
When and how to respond to vaccine misinformation

Please share as widely as you can. I will be reaching out to all those registered to ask for their questions for Margie in advance. If you have any yourselves you would like to ask on behalf of your members please forward them to me by end of day Friday June 4th.

Registration for the event can be via this Eventbrite link https://www.eventbrite.com.au/e/156443096513
the events calendar on the GSNV website or the attached QR Code

A/Prof M. Danchin from Murdoch Children’s Research Institute, presents a webinar on How to build confidence in COVID-19 vaccines

04/06/2021

We encourage you to register for this free on line event. By registering you will have access to the symposium in a time that suits you so you don't need to stay up super late to find out the latest science and learnings about the MPS and Related Diseases.

The International Symposium of MPS and Related Diseases is an event organized and coordinated by MPS Spain in collaboration with different MPS societies worldwide.