MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
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 - 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...
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.
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
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
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...
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...
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...
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
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...
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
How the Fabry app can help clinicians to better understand pain in Fabry disease by Uma Ramaswami
Focus on Fabry - Expert and Patient Meeting 2019 How the Fabry pain app can help clinicians to better understand pain in Fabry disease by...
Mutations and predictions of disease severity by Derralynn Hughes
Focus on Fabry - Expert and Patient Meeting 2019 Mutations and predictions of disease severity by Derralynn Hughes Honorary Haematologist...
New therapies for Fabry disease by Derralynn Hughes
Focus on Fabry - Expert and Patient Meeting 2019 New therapies for Fabry disease by Derralynn A Hughes Lysosomal Storage Disorders Unit,...
Smartphone app to monitor symptoms in Fabry patients by Uma Ramaswami
MPS National Conference 2019 Smartphone app to monitor symptoms in Fabry patientsby Uma Ramaswami LSDU, Information Governance, Royal...