MPS and Related Diseases Society Australia in Heidelberg, Victoria, Australia | Community organisation

MPS and Related Diseases Society Australia

Locality: Heidelberg, Victoria, Australia

Phone: +61 1800 045 515

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• Medical and health
• Community organisation
• Medical service

22.01.2022 Tabitha, who is living with MPS I, told us about her love of photography to celebrate #MPSAwarenessDay. Hear some more interesting facts about Tabitha in our video: https://vimeo.com/417473116 We want you to share an interesting fact about yourself too! Share the video with a fact about you & tag #ChaseTheSigns & #MPSAwarenessDay

19.01.2022 With all the options for NDIS plans this may help you to unpack yours.

14.01.2022 Our friends have put together this cool video of home based physio during isolation whilst promoting International MPS Day #CHASETHESIGNS #MPSawareness https://drive.google.com//1v9guyQbyi-2pdBnP9dMN6rvkE/view

11.01.2022 We are excited to be able to share that recruitment for MPS I Study in pentosan polysulfate commences in Adelaide. The aim of the study is to assess the safety of the investigational product pentosan polysulfate (PPS) in patients with MPSI, and to determine if PPS can successfully alleviate pain and functional symptoms in MPS I patients who have received ERT and/or haemopoietic stem cell transplantation (HSCT). 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. Please reach out if you have any questions or need support around this. https://www.anzctr.org.au/Tr/Registration/TrialReview.aspx

11.01.2022 This year for #MPSAwarenessDay, the international MPS community joined forces to urge clinicians, therapists, families & the community to #ChaseTheSigns of the 7 types of MPS to improve earlier diagnosis & intervention. Head here for more info: www.mpssociety.org.au

04.01.2022 2020 has been a tough year but of course the needs of our families don’t stop because of Covid-19. So for those who haven’t seen ads for the Virtual Disability Expo, please follow the link to see when the expo is happening. These expos are a great way to get ideas for support aids, respite and therapy ideas and network with organisations to help support your family. ... https://www.virtualdisabilityexpo.com.au/

01.01.2022 13-year-old Shannae, who lives with MPS I, shared 7 facts about herself for MPS Awareness Day! Did you know she's a synchronised ice-skater?! Hear what she had to say in our video: https://vimeo.com/417473116 We want to hear an interesting fact about you too! So share the video with a fact about you & tag #ChaseTheSigns & #MPSAwarenessDay