GOSH celebrates Rare Disease Day 2026 with local community

Rare Disease Day is an international event which takes place annually on the 28th of February (or the 29th on a leap year – the rarest day of all!). GOSH specialises in rare disease research and to celebrate, we recently invited two local North London Year 4 classes to join us for the day to learn about how we care for patients with rare diseases.

Children were invited to see research stalls and engagement activities across the hospital – from eyeballs and DNA in our purpose-built research facility, to designing pills with our pharmacists. They saw a variety of research we have taking place at the NIHR GOSH Clinical Research Facility | Great Ormond Street Hospital (CRF) and our NIHR GOSH Biomedical Research Centre | Great Ormond Street Hospital (BRC).

Former patient, Maisie, joined us on the day. She is now part of our Young Person’s Advisory Group for research and and tells us all about her highlights:

“There were many great demonstrations to help the children understand a bit about research in the CRF. The first was a mock clinical trial using chocolate to explain what it means to give your consent and what randomisation means. Another fun activity involved extracting the DNA from strawberries and making friendship bracelets to learn about genetics. The kids also made a double helix structure with sweets, which was a very tasty opportunity!”

“Other stalls used models to represent their research, including a large model of the human eye that could be taken apart to show the importance of eye health. Another stall demonstrated neural tube defects such as spina bifida using 3D models that could be coloured in. There were some lovely drawings and models that separated each part that goes on to form our brain, skin and bones.

“A very popular stall returned from last year, VheaRts, that uses virtual reality (VR) to show 3D replicas of the heart. The students loved being able to interact with the heart and see each individual chamber and part up-close and were shown how hearts with potential issues can be seen in better detail using the VR. This is currently being used by doctors in complex cases who take scans of patients’ hearts to transfer into VR. It was amazing to know that with new technologies arising, we are able to create such helpful medical software that has a great impact on patients with heart diseases.

“Downstairs in Outpatients, the GOSH Pharmacy’s Pill Planet project wanted to know how to make pills easier to swallow for kids in the future. For help with this, they asked the students to draw how they want their pills to look, and what characters they could use in videos to help show children how to swallow tablets. There were some amazing characters created to represent pills and tablets, and some very creative star and heart shaped pill designs.

“Finally, the UCL School of Pharmacy team demonstrated different types of medicines and how they dissolve (or do not dissolve!) and talked to the children about whether they thought they could swallow tablets.

“It was amazing to see so much amazing research taking place at GOSH, and I loved seeing how creative the researchers were with getting children involved and interacting with medical research. The stalls opened up space for lots of questions and the children’s own opinions on the research taking place, and it was so lovely to see their interest, and how much awareness was raised through the event!

“From dealing with my own rare disease, which was treated at GOSH, it always fills me with gratitude to know that there is so much thought and effort going in to treating the plethora of rare diseases and issues currently affecting children worldwide. This is one of the main reasons I love being part of GOSH YPAG and having the opportunity to have a hands-on approach with research and helping other young people to engage with it themselves.

“I am so glad to have had the opportunity to attend Rare Disease Day 2026, and I want to thank all of the researchers and staff who made it possible!”

A big team effort was needed to plan and deliver the day, with special thanks to the children, teacher and parents from The Jenny Hammond Primary School, GOSH Pharmacy and UCL School of Pharmacy, the GOSH play team, GOSH Therapy Dogs and their owners, GOSH YPAG and researchers from UCL Great Ormond Street Institute of Child Health.