What is Rare Disease Day?
Rare Disease Day (28th February) is dedicated to raising awareness about rare diseases and their impact on the people they affect. It happens every year on the last day of February.
Our campaign: The 100
We support children and families affected by a particularly aggressive rare childhood cancer, neuroblastoma.
The 100 campaign for Rare Disease Day shines a light on the 100 children diagnosed each year in the UK and the shocking statistics that come with this awful disease. Around half of these children will have the ‘high-risk’ form of neuroblastoma.
There are different forms of neuroblastoma – low-risk, intermediate-risk, and high-risk, which is the most aggressive and difficult to treat. Almost 50% of children with high-risk neuroblastoma will experience a relapse after successfully responding to treatment. Once a child relapses, their chances of long-term survival will be less than 1 in 10.
High-risk neuroblastoma accounts for just 3% of childhood cancer diagnoses, yet it’s responsible for more than 10% of childhood cancer deaths.
Neuroblastoma has one of the lowest survival rates of all childhood cancers, with only 68% of children surviving for five years.
But when a child has the high-risk form of the disease, long-term survival has remained at or below 40%.
Treatment can often be intense, aggressive and highly toxic, causing significant short and long-term side-effects for children.
How can you get involved in #RareDiseaseDay?
Donate on our #RareDiseaseDay Facebook post on Thursday 28th February. We’re hoping 100 people will donate for the 100 children that will be diagnosed this year. Be one of those donations.
Share our #RareDiseaseDay posts on Thursday 28th February with just a couple of clicks on Facebook and Twitter. We’d love 100 people to share our posts for the 100 children that will be diagnosed with neuroblastoma this year. Be one of those shares and raise awareness of this awful disease with your friends and family.
How your donation and social media share helps
Every donation helps us to invest more in research and support more children and families affected by neuroblastoma, changing the outlook for children in the future but also doing all we can for children fighting the disease right now.
Every time you share something from Solving Kids’ Cancer on social media you help us to reach more (and new) people with our work. We are a small charity and neuroblastoma is a rare disease, affecting a tiny, but amazing, community. No matter how many followers or friends you have, every share counts and helps us spread the stories of these beautiful children.