Physiotherapy plays a key role in improving the quality of life for people with EB: increasing movement and reducing the risk of permanent disability. This collaboration is key for DEBRA, as despite the efforts made by the charity, physiotherapy is not included as a service for families on the National Health Service.
The aim of this project
The aim is to design a set of preventative, predetermined guidelines for people with EB and their carers in Catalonia. There is a well-defined need to improve what we know about the use of physiotherapy in EB and our aim is to provide the National Health Service with clear results of the benefits to patients, and to show how important this is to improve their quality of life.
Volunteer physiotherapists will gather the information we need and design a very specific medical care plan for people with EB, their work will include determining the cost involved in patient treatment and presenting the benefits to the department for health.
Natividad Romero, coordinator for the family support team at the Butterfly Children’s Charity said “this pioneering project is a step in the right direction and will help improve the quality of life for families with Butterfly Skin. Not only will it help to understand the complications of this disease at a very physical level and help to develop the right treatments, but it will also relieve families of the financial burden of self funding for this service if we can get the department of health to agree to offer this to patients on the National Health Service”
DEBRA currently looks after 35 patients with EB in Catalonia. The school of physiotherapy of Catalonia will coordinate the project so that everyone involved is working together to achieve our goal.
“With projects like these we are looking to raise awareness both in the community and amongst health authorities, in the therapeutic function of physiotherapy in rare diseases like Butterfly Skin and to offer our support to charities like DEBRA or Go2, who do such amazing work supporting people like this” said the dean of the school Ramon Aiguade.
About the Catalonia School of physiotherapists
This is the professional school that defends the interests of Catalan physiotherapists and ensure best practice. There are over 12.000 members.
Go2 is a non-profit organisation founded to help those that need it most. Their motto is “collaborate to change” Go2 was born to reach where other organisations have been unable to help, to support those that have been left behind. They use their experience, tools and human resources to support all-important causes, which have been identified as requiring their help.