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.
OFFRIDING cycling events launched - A new series of multi-day gravel ridesWednesday 25th March 2015
HotChillee with OPEN cycle announces the formation of a new series of cycling events that take you off-the-beaten-path. Developed by long-time cycling entrepreneurs Gerard Vroomen, Andy Kessler and Sven Thiele, OFFRIDING are free spirited multi-stage gravel rides exploring some of the most beautiful sites and regions around the world. It is bound by a sense of adventure to explore and complete the challenge rather than racing. As such, going off-course is actually encouraged.Read More ...
Cape Rouleur 2015 - Final resultsSunday 8th March 2015
An exciting week of cycling was closed off today with 100 Cape Rouleur 2015 riders taking part in the Cape Town Cycle Tour. Due to the fires which still burn in parts of the city the ride was shortened to 47km due to safety concerns - however the atmosphere wasn't dampened and Cape Rouleur riders "rode in solidarity" with the Cape Town Fire Fighters.Read More ...