Welcome to our Autumn Newsletter. We are delighted to share with you all the exciting things happening in DEBRA Ireland and stories from our amazing patients living with EB.

You will learn about the agony the warm summer nights bring to our friends living with EB. Emma shares her pain in trying to sleep during the night with the heat, and what a difference our Family Support Team has made to this through your support.

The brave and inspiring Claudia opens up to us to share her mental health struggles to help others.

Read about some exciting research projects now underway because of the amazing kindness of our donors this year.

We also welcome our newest member of the Family Support team, Kate, who shares her thoughts and experiences working in DEBRA Ireland.

And learn how you can truly change the lives of people living with EB by leaving a lasting memory and gift in your Will.

Hope you enjoy reading and a big thank you again for being part of the DEBRA Ireland family.

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The annual DEBRA International Congress took place last week from Thursday 16th until Sunday 19th September 2021. The event was hosted by DEBRA Russia, and although attendees could not be in Moscow in person this year, the charity ensured that the learning experience was as engaging as possible with a stellar line-up of 40 EB experts speaking in a 3D virtual environment. 

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This blog post was co-authored by Mary Bailey, an EB family member.

Clinical trials are how scientists test new methods to diagnose, treat, cure, and prevent health conditions, including rare health conditions such as EB. Clinical trials are a lengthy process usually, as the goal is to ensure this new method is both safe and effective before use.

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