Rare Disease Day took place on the 29th February to raise awareness of rare diseases and demonstrate the solidarity amongst this unique global community. The day includes a global ‘Chain of Lights’ to illuminate buildings and landmarks in the rare disease colours. Many c4c beneficiaries took part in rare disease day events.


Rare diseases have a negative impact on the health and wellbeing of children and young people, 70% of rare genetic diseases start in childhood, and 3 in 10 children with a rare disease won’t live to see their 5th birthday. There is a huge, unmet need to develop effective drugs for children with rare diseases. Currently only 5% of rare diseases have an effective treatment option. c4c is committed to improving the clinical trial infrastructure to create better medicines for all children and young people, including those with a rare disease.


The European Joint Programme on Rare Diseases (EJP RD) have launched a video that features testimonies illustrating the profound impact of EJP RD in the rare disease field: “The European Joint Programme on Rare Diseases: Transformative Stories”.

For further information about Rare Disease day, click here.