Rare disease day logoThis post is part of a series of articles for Rare Disease Day exploring the work in which BRC-funded researchers are involved. You can find our other articles here.


My role here at the National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) at Guy’s and St Thomas’ NHS Foundation Trust and King’s College London is all about public engagement. That means that as well as supporting researchers to translate their research into plain English for the public, I look for opportunities for us to take our research out into the community.

I believe that one of the most important ways we can do that is by working with children. We are committed to ensuring that young minds from every background get the opportunity to hear about our research and to consider a future career in Science Technology Engineering and Mathematics (STEM).

Madgalena discusses EB with the children

With that in mind, I accompanied Magdalena Martinez Queipo, Senior Clinical Research Nurse at Guy’s and St Thomas’ NHS Trust, on 21 February, when she talked to a class of Spanish school children about the BRC’s research into recessive dystrophic epidermolysis bullosa (RDEB), a rare genetic disorder which causes skin to blisters and tear at the slightest friction.

This was part of the Native Scientist programme which aims to “bring together role models and migrant pupils to promote science and language integrated learning

Magdalena and three other scientists worked with groups of 11 year olds (year 6), talking to a total of 18 students at the Cañada Blanch Spanish School in London about their areas of expertise.

Magdalena used different fabrics, visual images and skin diagrams to demonstrate how healthy skin differs to the skin of people with epidermolysis bullosa. She also gave them a chance to try out the suction blister machine which was used with children on the EBSTEM trial for a new stem cell therapy to treat RDEB.

The interactive demonstration meant that the children could ask questions throughout and really got engaged with the subject.

Magda and the children discuss images that visualise what EB feels like

Magdalena said “It is important that children understand rare diseases and how difficult it can be to live with some of them. It makes them more accepting when they encounter individuals who have them, but more importantly it inspires them to want to know more. Using real life applications of STEM is a great way of stimulating children’s inner curiosity. Showing them that scientists can come from a multitude of professional backgrounds opens children’s choices to future possibilities

 You can read an interview with Magdalena from Rare Diseases Day 2017 here.

Claire O’Neill, Public Engagement Project Manager said, “It was a pleasure to see how interested the children were in talking to Magda about skin and what can go wrong. Even though I couldn’t understand most of what was being said (as I don’t speak Spanish!) it was obvious how much they enjoyed the demonstration and Magda really captured their attention from the very start. It was also great that Magda was able to explain that nurses can ‘do’ research – it’s not just for people in labs!”

For more information on public engagement and upcoming events please get in touch with Claire O’Neill, Public Engagement Manager claire.oneill@gstt.nhs.uk 07876 034 393.