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MPS II Hunter Syndrome Latest Research:

MPS II Hunter Syndrome Latest Research:

Aug 3, 2022 | Clinical Trials, News, Research | 0 Comments

Presented at the WORLDSymposium 2022 CheckRare has just posted their presentation on MPS II Research Highlights: WORLDSymposium 2022 Learn...

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Current Treatment Options for MPS I and Gene Therapy 

Current Treatment Options for MPS I and Gene Therapy 

Aug 3, 2022 | Clinical Trials, News, Research, Treatment | 0 Comments

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...

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A Guided Pathway to the Clinical Trials Process

A Guided Pathway to the Clinical Trials Process

Aug 3, 2022 | Clinical Trials, News, Resources | 0 Comments

Courageous Parents Network has a Guided Pathway designed to present families with a clear-eyed picture of the clinical trials process, through the...

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What’s On Your Summer Reading List? 

What’s On Your Summer Reading List? 

Jul 20, 2022 | News, Resources | 0 Comments

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.

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Rare Revolution’s Magazine on Long-Term Caregiving

Rare Revolution’s Magazine on Long-Term Caregiving

Jun 30, 2022 | News, Resources | 0 Comments

Rare Revolution’s online magazine. This edition recognises the unrelenting mental and physical strains of caregiving.

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Mental Health Education Webinar Series

Mental Health Education Webinar Series

Jun 30, 2022 | News, Resources | 0 Comments

The Rare Disease Foundation has published five helpful videos on their YouTube channel from their recent Mental Health Webinar.

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A Guide to Help Siblings Cope

A Guide to Help Siblings Cope

Jun 30, 2022 | News, Resources | 0 Comments

Courageous Parent Network has published a guide Communicating Effectively and Compassionately to Help Siblings Cope.

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Quebec Is the First In Canada to Develop a New Rare Disease Policy 

Quebec Is the First In Canada to Develop a New Rare Disease Policy 

Jun 30, 2022 | News | 0 Comments

The Canadian MPS Society welcomes the news that the Government of Quebec has unveiled its policy for rare diseases…

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Promising News For Sanfilippo (MPS IIIA) Treatment

Promising News For Sanfilippo (MPS IIIA) Treatment

Jun 17, 2022 | Clinical Trials, News, Research | 0 Comments

Lysogene has just provided promising data from their clinical trials for the efficacy of Gene Therapy LYS-SAF302 in the treatment of MPS IIIA.

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What’s Morquio? By Titus Aged 3

What’s Morquio? By Titus Aged 3

Jun 17, 2022 | News, Resources | 0 Comments

Titus and his family have made a series of videos to show what it’s like to grow up with Morquio (MPS IV).

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