Rare Disease Day: 28th Feb 2023 – Take Part!28 Feb. 2023
Join in solidarity with the 300 million people around the world who have a rare disease.
What is Rare Disease Day?
Rare diseases (like MDS & CMML) and 6000 + diseases across the world often get misdiagnosed, forgotten or ignored. Rare Disease Day is a globally-coordinated movement that calls for action for people living with a rare disease to have equal opportunities in healthcare, access to diagnosis and therapies and social opportunity. There are 300 million people worldwide living with a rare disease. That's 5% of the global population.
MDS is a rare disease and a rarer blood cancer
MDS is 'the forgotten blood cancer'. It is often not called a cancer and therefore not captured in the guidelines developed by the health authorities. It's also difficult to diagnose so is often missed or misdiagnosed. As with all cancers, fast action enables faster diagnosis and better treatment. (See Spot the Symptoms for MDS signs and symptoms what to do if you see them.) By joining in solidarity with Rare Diseases Day, we can all raise awareness of MDS and the 6000 other rare diseases across the world.
How you can take part
In solidarity with 300 million people across the world who have a rare disease, light or decorate your home with the Rare Disease Day colours at 7 PM your local time on 28 February 2023.
Use fairy lights, candles, disco lamps, decorations, whatever you like
- Take a photo and post it on social media using the hashtags #lightupforrare #rarediseaseday #globalchainoflights.
- Or post your picture on our Facebook group.
- Or you could simply wear colourful clothes (or your MDS UK T-shirt if you have one!) - then share your photo on social media using the hashtag #shareyourcolours
Light up for Rare - Tuesday February 28th 2023
Rare diseases get forgotten
"Neil had a stem cell transplant scheduled for early March. Then UCLH checked his ferritin levels. If you’re having regular transfusions your iron levels should be monitored, Neil’s weren’t. After a year of iron-rich blood transfusions these were found to be stratospheric, so the transplant was put on the back burner."