As a membership organisation, we aim to provide the best support and care for people living with EB. We have a team experienced in the many challenges EB can bring and can help members in many ways outlined below. We also forge close working relationships with specialist EB nurses, some of whom are funded by DEBRA, as well as other health and social care professionals to connect patients with the services that they need to improve their quality of life. Our friendly team are available to support members as frequently as is needed.
We have a dedicated team with a wide range of skills, knowledge and experience to deliver EB support services including practical, financial, emotional support and advocacy for the EB community. Read more
Meet the team delivering essential EB support services, including practical, financial and emotional support and advocacy to the EB community. Read more
If you are struggling and need support, our Community Support team is available for first line emotional support, or to signpost to further psychological support, from Monday - Friday (9am - 5pm). Read more
Every day 6,000 people become unpaid carers. You may find this information useful whether you yourself are a carer yourself or you receive support from a carer. Read more
People living with EB, and their families may be entitled to certain government benefits or other schemes for financial support, including grants provided by DEBRA. Read more
If you are living with EB you may require some support throughout the employment process - from job searching and interviewing to understanding workplace and employment rights. Read more
People living with EB may require support in their educational journey, as well as an understanding of EB by their schools and peers. Read more
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 creating a DEBRA remembrance page. Read more