The government has launched a program to give EB sufferers advanced support. DEBRA will enhance skin care and provide a dependable method.
This is a massive achievement after years of persistence and hard work. The Ireland government will give a grant 700,000 euros on an annual basis for the purpose of treating the people suffering from EB (Epidermolysis Bullosa). This disease is rare and painful. This funding will be used to improve services, increase quality and also enhance support to such patients.
Two people who are known well and played a major role were Liz Collins and Ema Fogarty. The cause of the picture Ema believes has inspired many people and has never ceased to fight for changes to be made even in her forties. For many years now, Liz, a Parent Ambassador of DEBRA, has offered assistance to many families affected by EB. Both Ema and Liz shared with the audience their painful experiences, discussed their personal stories and campaigned for better resources, facilities and care for EB patients.
There is a discussion with DEBRA’s CEO Jimmy Fearon with Stephen Donnelly who is from the government side and he assured that a better and idealistic care system for the people living with EB would be established. Our goal now is on utilizing this funding, in conjunction with the government to ensure the expenditure of funds are appropriate and up to the right standards.
Although this funding will address the core medical needs of families and individuals living with EB, DEBRA will still be required to provide psychosocial help, be available and sustain, fund the network of community-based and research-based resources. Everyone in this journey is greatly appreciated by DEBRA. The impact of the grant has been fundamental and the organization is able to ensure high quality treatment to EB and give required support for the needed treatment.
