28/02 is Rare Disease Day: Take part!23 Feb. 2022
What is Rare Disease Day?
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
MDS: a Rare Blood Cancer
MDS is 'the forgotten blood cancer'. It is often not labelled as a form of cancer, and therefore not captured in the guidelines developed by the health authorities. This has become critical during the pandemics, where MDS - and CMML - have been frequently excluded from the lists of diseases deserving special treatment.
Now, with Covid restrictions lifting, we would like to highlight on Rare Disease Day the dangers this poses to MDS and other blood cancer conditions.
Approximately 7,000 people live with MDS in the UK, and they all struggle to live with COVID: even with four vaccine doses their protection to the virus may still be weak.
Read a recent study published by The Lancet:
Omicron neutralising antibodies after third COVID-19 vaccine dose in patients with cancer
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."
How can you participate?
- Join the global chain of lights and light or decorate your home with the Rare Disease Day colors at 7:00 PM your local time on February 28th
- Start a conversation on social media using the hashtag #RareDiseaseDay
- Share your story
- Advocate for equity
- Read and share the School Toolkit which help explains living with a rare disease to young children
- Find an event near you