News & Media

Rare Disease Month - The Lisa Burke Show

In the lead-up to Rare Disease Day on 29th February, Lara talks about the mental health impact on the whole family and care-giving unit....

EDS & Me VLOG Episode Forty: Wrapping up the year

Join me round the world campaigning, advocating and raising awareness of chronic, invisible and rare diseases in my role as President and...

#RareShowcase23 Lightning Talk Lara Bloom - How project ECHO can help rare diseases

At the London Rare Disease Showcase, Lara shared the work of The Ehlers-Danlos Society using project ECHO to help rare disease, with a...

"Never underestimate the power of the patient voice.

Our narrative brings the purpose, the reason and the emotion. Without it, a project is not complete."

- Lara Bloom