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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DEBRA Ireland is a member of the Health Research Charities Ireland group (HRCI). One of the aims of HRCI is to support charities in Ireland to fund healthcare research to assist them in improving the lives of those they support.

The Health Research Board (HRB) has been co-funding the HRCI-HRB Joint Funding Scheme with the HRCI since 2006. The HRB is the lead agency in Ireland supporting patient-centred research linked to health and social care. The HRCI-HRB Joint Funding Scheme allows charities to support patient-focused research of particular interest to specific patient groups. For DEBRA Ireland, this is research to improve the lives of those living with the rare, genetic skin condition, Epidermolysis Bullosa (EB). Through the HRCI-HRB Joint Funding Scheme, the costs of successful patient-focused research projects are shared by the HRB and the sponsoring charity, which must be a member of HRCI.

DEBRA Ireland is participating in the HRCI-HRB Joint Funding Scheme in 2021 based on our current research priorities, which are outlined below. All researchers must submit their applications to DEBRA Ireland directly to be considered for the scheme. The HRB will manage the awards

Expressions of Interest is open now, and will close Friday 20th August 2021 at 5pm.

Opening Date for Applications: 1st September 2021

Closing Date for Applications: 13th October 2021

Level of funding: Funding up to €300,000 (€100,000 p.a.)

Duration of Funding: 12 to 36 months

Focus of the call: We will prioritise applications that will contribute to knowledge of the causes, diagnosis and treatment for Dystrophic EB, Junctional EB, and EB Simplex based on the following areas: wound healing, pain management, gene therapy and medical devices.

For more information or to submit interest in applying, please contact: [email protected]

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