Recruitment for MPS I Study in pentosan polysulfate commences in Adelaide

02 October 2020

Paradigm Biopharmaceuticals Pty Ltd has announced they will be conducting the Phase 1/2 trial at Women’s and Children’s Hospital, Adelaide. The Principal investigator is Dr David Ketteridge.

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MPS and Coronavirus UPDATE for Families

22 March 2020

The MPS Society has developed this advice in conjunction with our expert Medical team.

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Rare Disease Day Feb 29 2020

13 March 2020

MPS Advocate Shannae Ku is featured in the following media pieces.

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Rare Disease Day to be celebrated during the Australian National MPS Conference 28th Feb 2020

27 January 2020

Families, clinical and scientific leaders will join together over dinner during the National MPS conference at Glenelg South Australia to discuss Rare Disease Advocacy. The theme of the meeting "Our Future and Hope" inspires the champions of rare disease with the mission to find a cure for MPS and Related Diseases.

JCR Pharmaceuticals Co., Ltd. is pleased to share the below progress of JR-141 for the treatment of Hunter Syndrome.

14 March 2019

These are steady steps towards development of JR-141 as a treatment option for Hunter patients around the globe.

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Pentosan polysulfate sodium, normally used as an anti-inflammatory for bladder pain, is repurposed in Dr. Simonaro’s lab to improve connective tissue

07 February 2019

Mount Sinai Partners with Paradigm Biopharmaceuticals Ltd. and ReqMed Company, Ltd. to Repurpose Drug to Battle Rare MPS Diseases

Life Saving Drugs Program (LSDP) review is released

15 October 2018

The Department of health has recently completed the LSDP Program review. This review of the LSDP has refined how new medicines are approved and current medicines are reviewed. There are now more definitive timelines for approvals to be given for medications to be admitted to the LSDP.

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06 September 2018


The LDNZ Trustees are thrilled to bring our 2nd Asia Pacific Lysosomal Conference to Auckland.

Date: 14th–16th February 2019

Where: Airport Holiday Inn

We are very pleased to announce that Prof. David Palmer has agreed to be the Scientific Chair. Prof. Palmer's vision for the meeting is:

On behalf of Lysosomal Diseases New Zealand and the Scientific Committee we look forward to welcoming you all to the 2nd Asia-Pacific Lysosomal Conference to be held in New Zealand.

This special meeting brings together scientists, clinicians, carers and families affected by these devastating diseases in a unique format, to discuss the latest advancements in treatments, therapies and management of these very complex conditions, with the intent to stimulate an interchange of ideas and develop collaborations among the investigators with different approaches and expertise.

There will be presentations on the current state of knowledge of these diseases and workshops for families and affected patients which are designed to foster interaction between investigators and families and to build networks within the Asia Pacific Region.

David Palmer - Scientific Chair

We look forward to welcoming you all to Auckland, New Zealand.

Lysogene Announces FDA approval of IND Application to Initiate Phase 2-3 Clinical Trial in MPS IIIA

06 September 2018

• Novel, one-time, investigational gene therapy treatment for MPS IIIA focused toward preventing neurocognitive decline • LYS-SAF302 product manufacture released to support the demands of phase 2-3 clinical trial • Implementation of the clinical trial depends on the strengthening of the Company’s financial capabilities, which is currently being pursued

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When MPS keeps pushing me down – I just keep moving

01 February 2018

To celebrate Rare Disease Day 2018 (28 February), the MPS Society Australia joined forces with the Sydney Dance Company to put on a dance class – with a difference.

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