We are a caring organisation and give hope, dignity and practical help to everyone who has EB and their families.
We help them cope with the condition and have the best life they can - because EB cannot be cured and never just goes away.
We sometimes use three sentences to help people understand what life is like when you have EB:
Our work puts us in direct and daily contact with people who have EB and their families.
We fund nurses, run clinics and offer care and advice to EB sufferers, give welfare support and liaise with EB support groups across the country.
We also commission world-leading research into the condition with the aim of finding effective treatments and ultimately a cure for EB.
Photos: ICAP Finisher's Party & Awards, The London-Paris 2014Thursday 3rd July 2014
A small selection of photographs from the ICAP Finisher's Dinner & Party and Jersey Awards. Lots more available soon ...Read More ...
LONDON-PARIS Spirit Awards 2014Tuesday 1st July 2014
Every year the HotChillee Ride Captains choose a rider from each seeded groups that best represents the Spirit of the event. These awards go back to the days when the event was first founded in 2004. Its not just about racing or beating fellow riders, there is also the help and encouragement that takes place with fellow riders in the peloton who may be going through a dark patch on the road.Read More ...