Rare Disease Day 2021
28 Feb 2021, 7 a.m.
Rare Disease Day is an international day celebrated in over 100 countries to raise awareness amongst the general public, the clinical community, and decision-makers about rare diseases and their impact on people affected and their families.
At GOSH we deliver 17 highly specialised services for patients with over 200 rare and complex conditions – the largest number of any NHS Trust in the UK.
In previous years at GOSH we have marked the day by hosting an information stall and hands-on activities for patients and their families and the public. The aim being to help raise awareness of how research at GOSH is helping to find treatments and cures for rare conditions. Patients had the chance to make a family tree to learn about genetic research and look at muscle cells under a microscope to find out about the causes of rare conditions. They have also made and took away their own DNA sequence key ring and found out about how genes and genomes influence health.
Last year patients and the public also took part in our #ShowYourRare , the interactive social media campaign for Rare Disease Day. GOSH got involved by holding a face painting stall using the RDD logo for inspiration and sharing photos using the hashtag #ShowYourRare in solidarity with people across the world who are living with a rare disease.
“When I come here I am brave and strong”
We also showcased Sample Bank - where patients’ leftover samples can be used in child health research instead of being thrown away. This will allow us to carry out even more cutting-edge research, helping us better understand rare conditions and develop the treatments of the future.
This year we will be marking this important day a little differently as we all stay safe during the Covid-19 pandemic but you can still talk to us on social media.
Crown Prince of Abu Dhabi meets clinicians and researchers at the Zayed Centre for Research into Rare Disease in Children
We recently hosted His Highness Sheikh Mohamed bin Zayed Al Nahyan, Crown Prince of Abu Dhabi, the Secretary of State for Health Sajid Javid MP, and the Secretary of State for Education Minister Nadhim Zahawi MP at our Zayed Centre for Research.
First findings from world’s largest study on long-COVID in children
Up to one in seven children and young people may have symptoms of long-COVID 15 weeks later, suggest preliminary findings from GOSH and UCL ICH.
Applying ethical AI to improve children’s care
Great Ormond Street Hospital for Children (GOSH) and Sensyne have announced a new partnership to improve children’s lives using clinical artificial intelligence to analyse anonymised patient data.
Clinical trial improves outcomes for children on ventilators
Trial finds that a greater involvement of nurses, minimising sedation use and increasing daily testing to assess the child’s readiness to come off the ventilator significantly reduced the time on mechanical ventilation.