Did you know that Rare Diseases Day falls on 29 February this year? That makes it extra special!
Rare Diseases Day is a special day to draw attention to Cornelia de Lange Syndrome (CdLS) and other rare diseases.
We want to make more people aware of these conditions and show what it means for families affected by them. It is important because it increases understanding and recognition and shows that we are stronger together!
Strong together in the CdLS community
This event brings us, the CdLS community, together. It gives you and me, along with other families, doctors and researchers, the chance to connect.
We share similar experiences, and that very thing creates a sense of belonging and support, which is very valuable in difficult times.
Greater attention for rare diseases
The day helps raise awareness of rare conditions among researchers and in the wider society.
More awareness can lead to more funding and attention to research on treatments, which can improve the quality of life of CdLS children.
Together, let's make Rare Diseases Day colourful:
- #RareDiseasesDay2024
- #ShareYourColors
- #CdLSawareness
