MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Farber Disease Factsheet
This factsheet provides information about Farber disease, a rare, progressive disease caused by a deficiency (reduced function) of an enzyme called acid ceramidase.
Fabry Findings - Issue No. 3 - Spring 2020
Findings from research conducted with the Fabry community by Rare Disease Research Partners on behalf of the Fabry International Network.
Be prepared: emergency information for admission to hospital
Emergency information for admission to hospital that you should have to hand.
Covid
Please find below some updated information from our adult clinical centres. The clinical centres are working tirelessly to manage the...
Poster presentation - Prevalence of intestinal disease as terminal event in MPS III Sanfilippo
The MPS Society was aware, through its work with patients and their families, that individuals with MPS III have a wide range of...
Poster presentation - Understanding Fabry in Families study
Jacqueline Adam presents the findings of the 'Understanding Fabry in Families Study' as a poster submitted to WORLDSymposium™ 2020. The...
Gene therapy for MPS
The American Society of Gene & Cell Therapy (ASGCT) have developed a series of patient-friendly resources to educate on gene therapy...
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Research article - Pathway to diagnosis and burden of illness in MPS VII
Background Mucopolysaccharidosis type VII (Sly disease, MPS VII), is an ultra-rare, multi-symptom disease with variable clinical...
Understanding Fabry disease - information for parents and families
This booklet is designed to help anyone living with or affected by Fabry disease.
Fabry Findings - Issue No. 2 - Winter 2019
Findings from research conducted with the Fabry community by Rare Disease Research Partners on behalf of the Fabry International Network.
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Why is my MPS child walking less and what can be done to help? By Si Santra
MPS National Conference 2019 Why is my MPS child walking less and what can be done to help? By Si Santra Birmingham Children's Hospital
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Fabry and my family by Jane McKenna
Focus on Fabry - Expert and Patient Meeting 2019 Fabry and my family by Jane McKenna A different journey
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Fabry disease - Neurology update by Mark Roberts
Focus on Fabry - Expert and Patient Meeting 2019 Fabry disease –Neurology Update by Dr Mark Roberts Manchester Centre for Adult Metabolic...
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Fabry Disease - What to look for in children by Anupam Chakrapani
Focus on Fabry - Expert Patient Meeting 2019 Fabry Disease – What to look for in children by Anupam Chakrapani Paediatrician at Great...
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Fabry diseases - What causes my symptoms? by Dr Ana Janovic and Mark Roberts
Focus on Fabry - Expert and Patient Meeting 2019 Fabry disease – What causes my symptoms? By Dr Ana Janovic and Mark Roberts Manchester...
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Fabry in Families by Jacqueline Adam
Focus on Fabry - Expert and Patient Meeting 2019 Fabry in Families by Jacqueline Adam Clinical and Communications Lead at MPS Commercial
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Family tree and the role of the genetic counsellors in metabolic MDT clinics by Dr Karolina Stepien
Focus on Fabry - Expert and Patient Meeting 2019 Family tree and the role of the genetic counsellors in metabolic MDT clinics by Dr...
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How are drugs approved and audited? by Tom Kenny
Focus on Fabry - Expert and Patient Meeting 2019 How are drugs approved and audited? by Tom Kenny Role of CRG, NHSE and NICE