Resources

Fabry International Network Newsletter - December 2020

The latest newsletter from the Fabry International Network (FIN) is now available. A word from the President Dear All The last newsletter...

Fabry Findings - Issue No. 4 - Autumn 2020

Findings from research conducted with the Fabry community by Rare Disease Research Partners on behalf of the Fabry International Network.

Focus on Fabry: Fabry treatment update webinar

This webinar for Fabry patients and their families provides information about available interventional studies, who is eligible for them.

Fabry International Network Newsletter - June 2020

The latest newsletter from the Fabry International Network (FIN).

Focus on Fabry: living with Fabry and coronavirus

First Fabry patient webinar focussing on Fabry and coronavirus is today at 4pm.

Katrina's video - Fabry Awareness Month

Takeda have produced a film for Fabry awareness month this April highlighting what it is like to live with Fabry.

Simon's video - Fabry Awareness Month

In this video Simon discusses what life was like before he received a diagnosis and how it now affects him and his family.

Disability Living Allowance and Personal Independence Payments

Advice on managing the transition between Disability Living Allowance (DLA) and Personal Independence Payments (PIP) for people with Fabry.

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...

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...

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...

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.

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