We understand EB. We know how difficult this journey can be and that the needs you may have are very particular to you and your situation. We can help in all kinds of everyday ways, to listen to you, support you, and alleviate unimaginable pressures.
Services provided by our EB Support Team cover a wide range. Our services include:
Deirdre
Head of Family Support
Eve
Family Support Worker
Aoife
Family Support Admin Officer
Seamus - EB simplex
Understanding that EB can have a huge financial impact on you and your family, we offer a range of financial supports that you can access, no matter what your financial situation may be.
All our grants are available to residents in the Republic of Ireland and are subject to funding and approval.
Living with EB can sometimes take over and leave little time for you and your well-being. Our annual Respite and Wellness Grant offers each home the opportunity to get that all-important breathing space.
This grant can go towards a holiday, a great day out or any recreational activity that may improve your well-being and your family’s well-being.
Our hospitalisation grant provides financial assistance during a hospital stay for EB treatment, helping to alleviate the additional expenses that may arise.
Eligibility for the grant extends to anyone who has been admitted to hospital for EB treatment for a minimum of two nights, as well as parents whose child has been admitted.
This weekly grant can go towards various costs, such as food, travel, activities to keep busy, nearby accommodation for family or parents, and more.
The Special Circumstances Grants are provided to rectify or address an immediate problem for a family or individual affected by EB following an assessment by a medical professional or our team.
Each application request is dealt with in confidence and may be subject to medical recommendation and the availability of funds.
We understand that living with EB can bring significant emotional and social challenges, and that professional counselling can be hugely helpful for some. If you would like to access this type of support, we can provide you with funding to engage in counselling or therapy.
As EB not only affects those diagnosed with the condition, we offer our psychological support grant to all members of the family
Siblings play a key role in the lives of people with EB and we think it is very important to recognise and thank them for their help, support and care for their sister or brother with EB over the years. Every two years, we open up our Sibling Appreciation Grant where any person with EB can nominate their under 18’s sibling to receive a gift voucher from Debra.
Applications now closed
We understand Christmas can be an expensive time of year. That is why we like to offer all our households the option to apply for a One-4-All voucher to help relieve some pressure or to just treat yourself and your family to something nice.
Applications open in October.
We understand EB, what it means to be living with EB, caring for someone with EB, or be bereaved by EB. Managing life with EB is not easy, which is why we will be by your side, ready to support you through all life’s challenges.
Our EB Support Team has a wide range of skills, knowledge and experience to help you in all kinds of everyday ways, either at the comfort of your own home, a place of your choice or by phone. We provide clear and accurate information about EB as well as support with issues which may impact your everyday life, including benefits, employment, housing, school, emotional support, referrals to specialist healthcare and more.
All our conversations are in the strictest of confidence and our service is delivered over the phone and in the community so we will always come to you.
Sharing knowledge and similar experiences can be very valuable. We offer various opportunities throughout the year to encourage everyone with EB to connect with each other.
From family days to adult peer support groups, you can come together to share your knowledge of EB, support each other and make new friends.
We can offer a listening ear when grieving, refer you for further support in your local area, help make funeral arrangements, help you access benefit entitlements, as well as assist in other ways you mean need.
We provide one-to-one bereavement support to individuals and families who have lost a loved one to EB. Wherever you are coming from, the support team are here to help you navigate your way through your grief.
This support can be tailored to your needs and available for as long as you need it.
You can order one of our bespoke booklets to help children explain their own story of EB in an easy and simple way when navigating different stages in their life.
They can be personalised for any child starting school: illustrations can look like the child and their likes and other details will be reflected in the story to make it unique to the child.
Dealing with the daily challenges of EB can be difficult and tiring. We can help you make sure your voice is heard and advocate on your behalf and for services, both locally and nationally.
We can also help you explain what EB is and how it can impact everyday life to other organisations, including housing departments, a child’s school, a workplace or social services.
All our support services are free, confidential, and tailored to your individual needs. Just complete our simple registration process.
emotional visits
support calls
advocacy calls and meetings made on behalf of people impacted by EB
grant applications
