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. We understand EB, what it means to be living with EB, caring for someone with EB, or be bereaved by EB.
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.
Whether you need help or guidance with a specific topic like accessing health services or just a listening ear, we are here.
Our service is delivered in the community, so we can always come to you whether that's your home or a café near you.
We are a non-judgmental service and can provide a listening ear to help you cope with the diverse challenges living with EB can bring.
We understand that these challenges may be unique to your family and specific to living with EB so our support is tailored to your individual circumstances.
If you have recently discovered that your newborn has a suspected case of EB, we want you to know that we are here to offer support.
We understand that receiving a new diagnosis can be overwhelming, and it is important to take things one day at a time.
Our experienced team has helped numerous families adjust to an EB diagnosis, and we are here to assist you as well. To access support, simply reach out to our team and we will arrange a call or home visit according to your needs.
All our support services are free, confidential, and tailored to your individual needs.
We provide support in all 32 counties.
Just complete our simple registration process.
All our support services are free, confidential, and tailored to your individual needs. Just complete our simple registration process.
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.
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.
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.