Today, 29th of February 2020, we join the campaign created by the Spanish Federation for rare diseases (FEDER) “Our hope grows with you” to celebrate world awareness day for EB. With this we would like to underline and communicate the importance of equality when it comes to accessing treatments and care. This must be of the highest standard regardless of where a patient lives in the world.
Using the motto “Our hope grows with you”, FEDER emphasized the importance of the amazing work of the 368 different associated charities and their efforts to push for more research, social change and above all to highlight the prominence of their work with families and patients.
From the charity we work hard to support families with EB, and our team of experts are a fantastic example of what can be achieved through unified action. Last year we raised € 32 000 to finance a translational research project on EB, led by Dr Marcela del Rio at the Medical Research Centre for Rare Diseases (CIBERER), the University Carlos III of Madrid (UC3M) the Centre for Energetic, Environmental and Technological Research (CIEMAT) and the Institute for Health of the Jimenez Diaz Foundation.
Maria Jose Escamez chief researcher for the programme said “The involvement of people with the condition is key to making real progress in our research. Thanks to the involvement of DEBRA and their contribution to our projects we are able to continue with our research.”
In their press release FEDER also emphasized the role of charities in their work to defend the rights of the people they represent: at DEBRA we are fighting for the right for people with EB to access essential care products on the National Health Service and access to physiotherapy to prevent deterioration and improve quality of life. We are also requesting that the public health service cover dental health for people with EB as they often suffer from severe complications. We will continue to insist on the point that specialist carers must be made available for patients in hospitals.
