EB WITHOUT BORDERS
EB is a rare medical condition so there are many people who may not have heard of it before, including health professionals as well as the general public. We understand how worrying and daunting a situation like this can be, which is why EB Without Borders was created. Before contacting us, we advise you to read the information below to learn more about the EB Without Borders team and how they can help you.
What is EB Without Borders?
EB Without Borders is a team made up of volunteers from established DEBRA and EB patient support groups.
What does EB Without Borders do?
The team responds to requests for information and help from people affected by EB living in any country worldwide where there is no DEBRA group structure in place and little to no clinical knowledge of EB.
Who can contact EB Without Borders?
Anyone! Whether you are someone who has EB, concerned about a relative or friend with EB, or are a health professional new to the condition, please contact the team with your queries.
How can EB Without Borders help me?
You can find a list on the number of ways we can help you below. Unfortunately, we have limitations so you will see that there are some things that we cannot do for you. However, we still encourage you to reach out to us so we can help in other ways to get you the support you need in your country.
HOW WE CAN HELP
We can provide you with general information and facts about EB to share with your family, friends, colleagues, and the general public as well as with health professionals in your country who are not familiar with EB.
We can provide you with EB health guides that provide general care recommendations to help you in your daily management of EB.
We can supply you with resources on the latest best practice for EB care to share with health professionals in your country so they know how to look after you.
We aid communication and the exchange of knowledge between international EB clinical experts and health professionals in your country to help them care for you.
We can link you to other people and families in your country who are also living with EB.
We can support and mentor you to set up your own DEBRA group in your country.
HOW WE CANNOT HELP
As our volunteers are not medical professionals, we are unable to give medical advice under any circumstances.
We are unable to provide any financial support.
We are unable to supply any families or individuals with bandages, creams, or any other medical products.
Contact EB Without Borders
To contact the EB Without Borders team, please fill out the form below. The more information you are able to provide, the better we can assist you in your query. Before contacting us, we advise you to read the information above to learn more about the EB Without Borders team and how they can help you.