Rare Disease Day 2021

28 Feb 2021, 7 a.m.

RDD 2021 banner

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”

Paige, aged 6, at GOSH's Rare Disease Day 2020
Rare Disease Day 2020 group

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.

1 in 17 will have a rare disease_RDD
3.5 million in the UK RDD

Common inflammatory bowel disease treatment is linked to reduced COVID-19 antibody response

New evidence indicates the commonly-prescribed inflammatory bowel disease (IBD) drug infliximab blunts the immune system to COVID-19 infection, potentially increasing the risk of reinfection.

GOSH and UCL researchers receive funding to improve outcomes for children and young people with cancer

Researchers at University College London and Great Ormond Street Hospital receive £1.7m of grants in new Cancer Research UK-Children with Cancer UK Innovation Awards.

MRI scans more precisely define and detect some abnormalities in unborn babies

MRI scanning can more precisely define and detect head, neck, thoracic, abdominal and spinal malformations in unborn babies, finds a large multidisciplinary study led by Evelina London Children’s Hospital, Great Ormond Street Hospital and UCL.

Cellular benefits of gene therapy seen decades after treatment

An international collaboration has shown the beneficial effects of gene therapy can be seen decades after the transplanted blood stem cells have been cleared by the body.