Share your story
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.
Every member’s story helps us better represent the EB community. Because different campaigns, audiences, and opportunities require different types of experiences, it can sometimes be challenging to find the right story at the right moment. The more members we know who are open to sharing and the more diverse those experiences are, the easier it is for us to reflect the true variety of our community in our messaging, campaigns, and speakers.
Our retail team is building a library of short audio messages from members, so customers can hear directly from people living with or affected by EB. These messages help show how shopping and donating in our stores makes a real difference.
We’re looking for 8–10 members to record a 30–40 second voice message on their phone. Your recording will be played in-store, helping raise awareness and connect customers to the EB community.
What could you say?
You might like to:
- Introduce yourself (if you feel comfortable)
- Thank customers for their support
- Share a little about your experience of EB
- Explain how DEBRA has supported you or your family
There’s no set script, what matters most is that your message feels natural and personal.
How to take part
- Record on your phone (using apps like Voice Memos or Recorder
- Find a quiet space with minimal background noise
- Keep your message to 30–40 seconds
- Speak clearly and at a steady pace
- If you don’t have a smartphone or need a bit of help, just let us know, we’re happy to support.
Interested?
Email to let us know membership@debra.org.uk
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.
Medics 4 Rare diseases has just opened up their Ambassador programme to new applicants! This is a great opportunity to work on your advocacy skills and work with the team and wider rare disease community to share your expertise and experiences.
All the information you need to apply is here!
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 membership@debra.org.uk. 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.
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.