Resources and Links

Below is a list of resources and links which will be added to over time.

The aim being to act as a starting point for people suffering from, rare disease or chronic illness, to assist them and / or, their carers in the search for relevant, reliable and relatable information.

Ehlers-Danlos Syndrome

Websites / organisations

1. The EDS Society

Relevant viewing:

1. WE ARE VISIBLE - A feature length documentary by Karina Sturm

Relevant reading:

1. Living Life to The Fullest with Ehler-Danlos Syndrome

2. Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder

Relevant listening:

1. Indispensible Podcast: Episode on chronic and invisible health

Relevant Research:

1. 'A Framework for the Classification of Joint Hypermobility and Related Conditions'; (2017) MARCO CASTORI,* BRAD TINKLE, HOWARD LEVY, RODNEY GRAHAME, FRANSISKA MALFAIT, AND ALAN HAKIM.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

Websites / Organisations

1. MEAction

2. MEPedia

3. Emerge Australia

Relevant viewing:

1. UNREST - documentary film by Jennifer Brae

Rare Disease

Websites / organisations

1. Rare Voices Australia