MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Living well with Fabry: a shared decision-making toolkit
This toolkit has been developed in collaboration with people living with Fabry and Fabry specialists and can help you talk about some of the symptoms that people have told us impact them the most.
MPS III Sanfilippo - information for individuals, parents and families
We know that being diagnosed with a rare condition is life-changing and you can struggle to come to terms with it.
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Family communication - Alison Wilson
Alison Wilson, Senior Support & Advocacy Officer at the MPS Society, explains how Fabry is inherited and highlights why family communication matters.
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Nutrition - Dr Seema Kanwal
Dr Seema Kanwal discusses best nutrition practices, possible symptoms of GI problems and options for their management.
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Talking to your teens, transition matters - Uma Ramaswami
Uma Ramaswami talks about the transition process of adolescents and young adults with Fabry from child-centred to adult-orientated health care systems.
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Living with Fabry disease - David Moreno-Martinez
Dr Moreno-Martinez talks about living with Fabry disease and what it means to navigate a rare genetic condition at Fabry Matters Conference 2024.
Hunter Outcome Survey Patient Report 2023
Read the 2023 annual update of the Hunter Outcome Survey (HOS), a large disease registry which has facilitated the collection of data on the signs symptoms and progression of MPS II.
My Fabry treatment: a guide to empower and inform Fabry patients on their treatment journey
This guide is for patients with Fabry disease. It explains the structure of care you may receive at your specialist centre.
Lysosomal acid lipase deficiency (LAL D) - information for individuals, parents and families
Find more information about Lysosomal acid lipase deficiency (LAL D), a rare genetic disease.
BBC documentary highlights the importance of Newborn Screening for early diagnosis
BBC documentary highlights the importance of Newborn Screening for early diagnosis.
How physiotherapy can help with the physical symptoms of MPS III Sanfilippo
This guide explains the importance of physiotherapy for people with MPS III, how it helps and different interventions that can be used.
White paper on improved outcomes for children with MLD following gene therapy
Recently published white paper on the improved outcomes for children with MLD following gene therapy based on findings from a parent survey.
Recent ENT publication: Hyo-Mental Angle and Distance
Hyo-Mental Angle and Distance: An Important Adjunct in Airway Assessment of Adult Mucopolysaccharidosis This research was conducted by...
Recent publication: MPS and the Ear, Nose and Throat (ENT) Specialist
You can view the recent publication ‘Mucopolysaccharidosis and the ENT Specialist’ online here. The article, written by Chaitanya...
MPS VII Sly disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS I Scheie disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS IVA Morquio disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
MPS VI Maroteaux-Lamy disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...