Fabry Australia ‘Understanding Fabry Disease’ Factsheet

Understanding Fabry Disease booklet was produced by Fabry Australia and reviewed by Fabry Australia’s Medical Advisory Committee. It is an excellent resource for explaining Fabry disease to a newly diagnosed patient and their family and or friends. It is a helpful resource to show health professionals unfamiliar with Fabry Disease.

Fabry Emergency Card

Fabry Australia has developed the Fabry Emergency Card for Fabry patients, carers and family members to keep on hand in their wallet or handbag. The card is particularly useful in an emergency where health professionals do not know anything about Fabry disease. The card has details of the disease; clinical symptoms, organ involvement as well as the international Medical Emergency Symbol and OMIM code for Fabry disease.

Contact us to request a card, please remember to include your postal address.

What is OMIM?

Online Mendelian Inheritance in Man® or OMIM is a comprehensive, authoritative compendium of human genes and genetic phenotypes that is freely available and updated daily. The full-text, referenced overviews in OMIM contain information on all known mendelian disorders and over 15,000 genes. OMIM focuses on the relationship between phenotype and genotype. It is updated daily, and the entries contain copious links to other genetics resources. OMIM is authored and edited at the McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine.

The OMIM for Fabry disease is # 301500
To view all detailed information about Fabry disease which is most helpful to health professionals who have little knowledge on the disease, look up the specific OMIM link for Fabry disease HERE 

Resources for Students and Educators

Talking about Fabry Disease

A Guide for Students

Part of living with Fabry disease is talking about it with friends and classmates. They may ask questions. People may want to know about this condition.

Here are some ways to talk to people about Fabry disease and answer their questions.

Click here to download your copy 

Amicus Therapeutics has developed this educational resource in collaboration with the rare disease community and thought leaders.

Helping the Student Living with Fabry Disease

Questions and Answers for Educators, Counsellors, and School Health-care Professionals

Information to guide school professionals as they support the student living with Fabry disease and help other students understand this hidden, chronic condition.

Click here to download your copy

Amicus Therapeutics has developed this educational resource in collaboration with the rare disease community and thought leaders.

Faber the Dragon childrens book animation

Faber the Dragon is a children’s story about a small child who has a messy dragon living inside of him. Julie Fitzgerald, a fellow Fabry patient, penned the book for her young niece to help explain her rare disease to friends and teachers in simple terms. 

Further Resources & Links

Fabry Australia is a member of the following Genetic and Rare Disease Organisations;