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Keep up with what’s happening in the MPS community, industry and research.
News Feed
News from the MPS Community, industry and research.
To view posts by category, click on your chosen category which appears after the date in any of the posts.
We need YOUR VOICE!
Join our incredible team of Directors in 2022 to help oversee the organisation’s strategic purpose and direction. Your leadership can have a life changing impact on the lives of families affected by MPS.
Podcast: How To Manage the Responsibilities of Being a Caregiver and Avoid Burnout
In this podcast by Beyond My Battle, learn how any caregiver can address feelings of helplessness, how to support a loved one effectively, and the importance of practicing self-care to avoid burnout.
MPS III Gene Therapy LYS-SAF302 Boosts or Stabilizes Development After 2 Years
New data from the AAVance trial has revealed children with Sanfilippo syndrome type A, including those with severe disease, showed stable or...
Avrobio Receives Orphan Drug Designation for Hunter Syndrome Gene Therapy
Avrobio has received orphan drug designation for its gene therapy, AVR-RD-05, from the US Food and Drug Administration (FDA) to treat...
MPS II Hunter Syndrome Latest Research:
Presented at the WORLDSymposium 2022 CheckRare has just posted their presentation on MPS II Research Highlights: WORLDSymposium 2022 Learn...
Current Treatment Options for MPS I and Gene Therapy
In this radio interview, Dr. Wang discusses the current treatment options for MPS I as well as the work he is doing to assess the safety and...
A Guided Pathway to the Clinical Trials Process
Courageous Parents Network has a Guided Pathway designed to present families with a clear-eyed picture of the clinical trials process, through the...
What’s On Your Summer Reading List?
A list of books for children to teach them how everyone is unique how to turn feelings of sadness, anger and fear into happiness and how to find kindness and positives in each day.
Rare Revolution’s Magazine on Long-Term Caregiving
Rare Revolution’s online magazine. This edition recognises the unrelenting mental and physical strains of caregiving.
Mental Health Education Webinar Series
The Rare Disease Foundation has published five helpful videos on their YouTube channel from their recent Mental Health Webinar.