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.
Increasingly researchers are asked by funders and ethics committees to provide a Patient and Public Involvement (PPI) plan and to demonstrate they have considered the perspectives of the patients and families they wish to recruit to their clinical trials and research. The European Young Persons Advisory Group Network (eYPAGnet) can provide support in both the design and delivery of the Patient and Public Involvement Plan for any research involving babies, children and young people.