Family members play a leading role in making important changes to the provision of healthcare available

7 May, 2019

In the last few weeks some of our most courageous family members have laid claims to improving on the current injustices with regards to available free treatments and care for people with EB on the National Health system.  From Andalucía to Cataluña we have been able to participate in some key debates to educate and influence the health authorities: To inform and educate on the severity of this condition, what it means to live with the disease and what is needed to help.  We are delighted to announce that some important changes have now been made. 

The Catalan health services have acknowledged the specific needs of people with EB and as a consequence they have created a pilot programme secured for one year that guarantees access to free health care treatment for people with EB. 

There are currently 60 people in Catalonia living with EB.  All of these require specialist daily treatment and medicines to help treat wounds and make the pain more tolerable. The elevated cost of treatment for families is very difficult to meet as these are all in addition to many other expenses.  

In other news, Juan Antonio, DEBRA member with EB supported a different initiative to improve the day to day for our families.  Juan Antonio took part in a parliamentary discussion where he openly talk about his experiences of living with the disease and the needs of patients in the community: these include access to free bandaging material, home visits, access to health care professionals trained in treating the condition, etc. 

The work and efforts of the families mean that one-day in the future the public health authorities will listen, and they will make living with EB just a little bit easier. 

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