Think Rare, Think MPS 

Think Rare, Think MPS supports earlier recognition of the signs and symptoms of MPS diseases by engaging with healthcare professionals.

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For healthcare professionals

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MPS and related lysosomal diseases can be hard to detect. So we want to give you the tools to be able to learn about MPS, Fabry and related diseases in order for children with the condition to receive a faster diagnosis.

Find out about the diseases

The MPS Society and our sister organisation, Rare Disease Research Partners (RDRP) are working together in a joint campaign, Think Rare, Think MPS, to highlight these rare diseases, with one main aim to improve the diagnosis time. 

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Working in collaboration 

 

Focus on ENT symptoms

More than 90% of MPS patients have head and neck manifestations (4,5). One of the first signs of MPS is often recurrent ear and upper respiratory infections and many patients will have their tonsils and adenoids removed (3). ENT specialists are therefore often among the first specialists to see a child with MPS. Whilst we want to encourage clinicians from all specialities to think MPS, starting with ENT was the logical choice.

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Think Rare, Think MPS

To find out more about our Think Rare, Think MPS campaign, please read our blog post below. 
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The MPS Society is committed to bringing about change in the diagnostic journey of children affected by these rare conditions. The Think Rare, Think MPS campaign supports earlier recognition of the signs and symptoms of MPS diseases by engaging with and educating the healthcare professionals most likely to see a patient with MPS in the early stages of the disease. #Spotthesigns

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Resources for professionals

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You might also be interested in

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Treatments

Current treatments for MPS, Fabry and related diseases consist largely of Enzyme Replacement Technology and Hematopoietic Stem Cell Transplantation.

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Clinical trials

Parents and patients are encouraged to talk to their expert clinician to discuss whether there are any clinical trial opportunities. 

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If you need further information or have something you want to share with healthcare professionals get in touch.