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