Visits and support calls
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.
Peer support and events
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.
Loss and bereavement support
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.
Personalised EB booklets for starting school
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.
Defending your rights and improving quality of life
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.