Summary of work
Ectodermal Dysplasias (ED) are rare complex genetic disorders affecting the development or function of the teeth, hair, nails and sweat glands. Envision Pharma Group (EPG), in collaboration with the Ectodermal Dysplasia Society, has written and designed a dual-purpose patient education booklet for children that both explains the condition to children with ED and creates empathy and positive bystander behaviour to tackle the common associated problem of bullying. The ‘Everybody’s Different’ theme encourages child audiences to embrace their own differences, and those of others they encounter and specifically contemplate how someone with ED might feel depending on the behaviour and support that is shown to them.
Working in collaboration with the ED society’s Medical Advisory Board to ensure medical accuracy, child-friendly language and carefully constructed examples help raise the engagement levels with children, increasing the effectiveness of the piece.
Pre-launch testing/content refinement has resulted in universal praise from the international ED community: “The joy is evident on his 10th birthday, he got information in who he is and why he is like that!! He was too excited that he wanted the whole world to know about EDs. From the bottom if my heart I say thanks to the society” – Anon, Kenya
Everybody’s Different was a slam dunk clear winner! It was inclusive, easy to use and written with great empathy for children with this rare condition. The visuals are appealing and help the storytelling and, crucially, the science is accurate. It’s easy to imagine this being used as a teaching aid in schools or with a parent. Simple but vivid explanations will help increase understanding and empathy among children’s classmates, and potentially reduce bullying.