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School toolkit: explaining living with a rare disease to children and teenagers

Do you know a young child or a family who is dealing with acceptance and making friends at school? Are you a pre-school or kindergarten teacher, and a student in your class has a rare disease? Are you a parent or adult who believes in sharing the values of empathy and inclusion with children and teenagers?

Within the Rare Disease Day global platform and together with our national alliance rare disease patient organisation partners, we have put together elements (translated in over 20 languages) which might help you start the conversation with teachers or with young children.

Please download them, adapt them, and translate them! They are tools for you to freely use.

For children from 5 to 6

A Friendship Story, Lesson Plan: Living with a rare disease stories and Fun activity #LightupForRare
In collaboration with Danijela Pešić

For children from 7 to 8

Merlin, the Little Feline and Lesson Plan: Making your community stronger
In collaboration with Manuel Preishuber, Pädagogische Hochschule Salzburg, Pro Rare Austria and Fondation Ipsen

For children from 8 to 12

Lesson Plan, slides, quiz and story builder packs, poster templates and feedback cards
In collaboration with Genetic Alliance UK

For teenagers from 12 to 16

Lesson Plan: Let’s explain rare diseases and the difference in the world
In collaboration with Child and Youth Care Zimbabwe and Fondation Ipsen

Colourable poster

Download our colourable poster for children from all age!

More resources from around the globe!

In addition, we have collected here in one place, several resources which already exist and which have been produced by patient groups around the world in a variety of languages – all of which are targeted at helping explain rare diseases to children.

Jeans for GenesUK (English)Jeans for Genes
Together in the world of innocenceRomania (Romanian)Prader Willi
FederitoSpain (Spanish)FEDER
Introduction to rare diseases (for care workers and teachers)Sweden (English and Swedish)Agrenska
Inform without dramatisingPortuguese (Portugal)RD-Portugal

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