Table 1 Summary of WORD Day activities

Lectures to HCPs

To improve awareness amongst general practitioners, paediatricians and other sub-specialists who may be the first people to come into contact with CYP presenting with PRDs.

Social media live sessions, posts and tweet chat

To discuss key challenges, examples of good practice and strategies for raising awareness with CYP, families, HCPs, patient/parent and professional organisations.

Uplighting of monuments in WORD Day colours

To improve awareness amongst the general public.

Sponsored physical activities

To improve awareness amongst the general public and achieve media coverage.

Awareness stands and selfie booths

To improve awareness amongst the general public through a presence in public places e.g. hospitals, universities and town centres, and by encouraging posts on social media displaying the WORD Day messaging.

Appearances on television, radio and podcast

To improve awareness amongst the general public, often featuring individual stories from CYP.

Cake sales and coffee mornings

To improve awareness of the general public and raise funds for local organisations.

CYP and family gatherings and workshops

To provide peer support and education, and information on research.