Vie smiling in front of a  mural with a rainbow.Vie Portland lives with epidermolysis bullosa simplex (EBS).

Sharing stories is critical to our work.  They can raise awareness of EB and of DEBRA with the general public and inspire the financial donations that we need to run our services and fund research.  They help healthcare workers, researchers, civil servants, and politicians understand EB better and therefore help us make the changes needed for those living with EB.  And stories allow us to share experiences, triumphs, and challenges within the EB community, to help others live better with EB. 

There is no more powerful way to show the impact EB can have than to hear directly from those living with the condition.


Share your story publicly

We share stories in lots of ways – through our social media, podcasts, news articles, our campaign emails or posters, blogs, quotes in publications, talking at events and meeting some of our major supporters.

But we understand that this is a personal decision and can be a daunting step to take.  We’d like to work with you to tell your story in a way that you feel comfortable with.   

Please start the conversation by filling in this form.


Share your story


RARE Youth Revolution

We are collaborating with RARE Youth Revolution, to amplify the voices of young people living with EB. 
RARE Youth Revolution has been created so that young people who are living with rare and complex conditions feel they have a safe space to share their experiences and can do so in a range of formats from article writing, podcasts, blogs, taking part in social media campaigns and video advocacy. Their vision for the future is to address the topics that children and young adults affected by rare conditions feel passionate about. 

We are looking for members under the age of 25 and living with EB to take part in creating a Teams video where you will discuss your experiences of living with EB in a Q&A format with another member.  If you would like to get involved in becoming a youth contributor to help spread awareness or would like to hear more, please reach out to [email protected], and we will put you in touch with RARE Youth Revolution and match you up with another member.
You can see some of the other videos they have created on their YouTube channel.


Talk to new DEBRA staff and volunteers

Help DEBRA volunteers, new staff and partners understand more about EB

DEBRA staff and volunteers have told us that meeting someone living with EB, at the start of their career with DEBRA, really helped them understand the importance of their role and what we’re trying to achieve here.
New partners that we work with similarly feel more motivated to help us raise funds and awareness of EB when they understand more about the condition.

By sharing your lived experience of EB by giving talks to friendly groups of DEBRA staff and supporters, you can help inspire and strengthen our relationships.  

If you’re a member and would like to find out more about giving a short talk about your EB, please fill in our ‘share your story’ form, and we will be in touch.