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

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

Relevant reading:
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 


Relevant viewing:
1. UNREST - documentary film by Jennifer Brae 

Rare Disease 
Websites / organisations