DEBRA Ireland Newsletter Summer Edition
Did you receive your latest issue of DEBRA Ireland’s Summer Newsletter? It is not one to miss!
In this issue…
Your kindness and compassion continues to change the lives of Ukrainian families living with EB.
Recently we shared with you the support DEBRA Ireland, alongside our affiliate community, are giving to help our friends in DEBRA Ukraine during this time of devastation and danger.
Now we want to share with you what a difference you have made in ensuring no family living with EB is without the vital medical supplies and care they need.
Also in this issue…
Aidan, many years ago, was touched by the caring ways of others, when his son, Stephen, was born with Cerebral Palsy. Sadly, Aidan’s son died when he was 3 years old.
Some years later, Aidan’s friend had a little girl with EB, and he saw the devastating impact of this condition. He knew he wanted to help DEBRA Ireland. To return the kindness once given to him.
We are forever grateful to have friends, like you and Aidan, who are there for families living with EB through the toughest of times.
Some big research news in this issue…
Together with you, we celebrate the news Amryt Pharma’s Filsuvez® has now been approved by the European Commission (EC) for use in the EU for people over 6 months!
This is a fantastic step forward towards making this treatment available to EB patients in Ireland.
In this issue you will read the next steps of this process. Thank you for being a crucial part in making research possible.
A Legacy of loving care
When Helen died at just 65, her husband Padraic, wanted to support something meaningful in her memory.
Padraic heard about the psychosocial support work being developed for EB patients and he immediately saw its importance, knowing it would mean so much to Helen.
Gifts in-memory and legacies touch each of our hearts in DEBRA. We promise to always cherish them in everything we do.
Your caring gift will transform the lives of families living with EB. Thank you.
