Categories: Health and Safety Date: May 26, 2010 Title: Project Charity Shop for Butterfly Children
The disease is characterised by extreme fragility of the skin which causes the skin to blister, creating open wounds at the lightest touch. Painful blisters form on the skin and the inner body linings (mouth, oesophagus, airways and the inside of the eyelids) EB leads to a severe disability as those affected loose the use of their hands and feet because of the constant open wounds and the retraction of the skin.
EB patients become totally dependant on their carer as they must be covered in protective bandages every day. This is an extremely slow and painful process.
DEBRA Spain is the Assosiation for Epidermolysis Bullosa in Spain, founded in 1993 by parents of children affected by EB in Spain and in Portugal.
The charity has been declared an organisation of public interest by the government: this means we adhere to total transparency and an annual audit of all our accounts and events.
DEBRA Spain employs 2 nurses, 1 psychologist, 1 social worker and 2 event and project managers.
We are here to offer healthcare advice and support to people with EB, their families and carers as well as to act as a guide to social services professionals.
We act as a medium for information on EB in all areas on both a national and international level. Advising schools, work places, healthcare advisers, etc. We develop and finance research into possible treatment.
We act as a forum for networking between people affected by the disease.
We raise awareness and support. The charity’s head office is based in Marbella but we have delegates in 7 other provinces.
DEBRA Spain now manages 4 charity shops with over 100 volunteers. This is why we need your help
Those affected by EB and their families come across two main obstacles on a daily basis. Lack of awareness Because EB is a rare disease babies born with the condition often suffer from a serious lack of knowledge and understanding by health careprofessionals. This leads to inaccurate diagnosis and often incorrect treatment which can lead to further pain and cause serious harm.
The lack of information provided to parents leads to further isolation and uncertainty. Lack of resources The national health service does not offer the specialist medical assistance which is essential to people with EB. They do not supply the bandages and daily treatment, physiotherapy and other all important resources.
The financial burden is substantial and often impossible to bear for many families.
DEBRA Spain needs to:
Raise awareness both in the health sector as well as amongst the public
Raise funds to offer help and support where the public administration system fails. Charity shops that make a real difference Charity shops are fundamental to the workings of the butterfly children charity
They raise awareness and provide a means of direct contact with the public.
They help to raise essential funds which are so important for the ongoing development of the charity. A charity shop also offers fantastic opportunities within a community
It is an ideal place to become a volunteer and to make people feel a part of something really worth while.
It also encourages the recycling of clothes and other objects which would otherwise be discarded.
Debra Spain offers the sale of quality clothing and goods at discounted and affordable prices.
www.debra.es - firstname.lastname@example.org - 952 816 434 C/ Real s/n. Conj,Puerto Golf Bloque 4, 1o- C 29660 Nueva Andalucía – Marbella (Malaga)