How to speak to young children about rare diseases

In the run up to Rare Disease Day 2022, we gathered a team of expert speakers from all around the world to tackle an important question: How should we talk to young children about rare diseases? Irina Ban, Yukiko Nishimura, Marta Jacinto, and Samuel Agyei Wiafe shared their experiences of talking to young children about rare diseases and their efforts to implement projects in local schools that engage and educate young people on the subject.

We had the joy of welcoming expert speaker Irina Ban, from ZVONCICA Childhood Cancer Parent Organisation, CCI Europe. With extensive experience both as a mother of a child who survived leukemia and as a professional working with the childhood cancer community, Irina shared insightful tips and tricks to explain rare diseases to young children.

Next, we heard from Yukiko Nishimura, President NPO ASrid in Japan. Yukiko explained the innovative programmes held throughout schools and youth centres in Japan that explore the subject of rare diseases. From craft activities to educational resources, Yukiko shared with us a wealth of information and expertise.

We then heard from Marta Jacinto, a member of the Inform without Dramas team at RD-Portugal in Portugal. Marta shared with us the successful toolkit used in Portuguese schools to help children understand what it means to live with a rare diseases.

Finally, we heard from Samuel Agyei Wiafe, Clinical Psychologist Founder/Executive Director at Rare Disease Ghana Initiative in Ghana. Providing a clinical perspective, Samuel outlined various successful initiatives taking place in Ghana that aim to expose young people to new ideas and engage them in the rare disease community.

Watch the live recording of the Webinar here, subtitled in English, Arabic, Chinese, Hindi, French, Spanish and Russian!

Drawing on the expertise of our global rare disease community, the team at Rare Disease Day has put together a school’s toolkit, which is available to download in over 20 different languages. The school’s toolkit includes a lesson plan and a PDF storybook that aims to facilitate conversations with young people about rare diseases. Download it here.

Catch up on our previous webinars: