如何让学校成为罕见病意识的载体

Experiences from Georgia and Portugal show how patient organisations and teachers are adapting the Rare Disease Day School Toolkits to their own communities, what they have learned along the way, and what others can learn from them.

School is one of the first places where children encounter difference. It is where they form friendships, ask questions and begin to understand that not everyone experiences the world in the same way.

The Rare Disease Day School Toolkits were created to help teachers, families and patient organisations bring rare diseases into those conversations in an engaging and age-appropriate way, with empathy and inclusion at their heart.

Designed for children and young people aged five to sixteen, the free resources range from stories and lesson plans to quizzes and creative classroom activities. They can be translated and adapted, offering a starting point rather than a fixed lesson to reproduce.

One of those resources is Merlin, the Little Feline, part of the Children of Genetics book series created by Fondation Ipsen. As Céline Colombier-Maffre, Manager of Publications at Fondation Ipsen, explains:

“The Children of Genetics book series makes complex topics such as rare diseases accessible to children through stories, emotions and imagination.

Seeing Merlin, the Little Feline used by schools, families and patient organisations around the world reminds us that stories have a unique power to build understanding, empathy and inclusion from an early age.”

But these collections of resources are only the beginning.

In Georgia and Portugal, organisations and teachers have taken these resources in very different directions, translating them, combining them with new activities, bringing families into classrooms and giving pupils the freedom to explore rare diseases in their own way.

What followed was not one model replicated across different schools, but a range of classroom experiences shaped by the people and communities behind them.

For Zhana Chokheli of the Rare Disease Alliance Georgia, Merlin, the Little Feline first became meaningful at home.

Zhana and her daughter read the English story together, translating it into Georgian page by page.Her daughter wanted to explain to friends why her younger brother, who lives with a rare disease, was different.

For Zhana, that sparked an idea: if the story could help her daughter, perhaps a fully translated Georgian version could help other children too.

After receiving permission from Fondation Ipsen to translate Merlin, the Alliance began adapting activities for Georgian schools.Younger children explored uniqueness through storytelling, games and activities such as comparing fingerprints.

Older pupils used role-play to consider rare diseases from the perspectives of a classmate, teacher or doctor.Teachers and school psychologists were involved in the preparation of the sessions.

And teachers did not simply deliver what the Alliance brought them.

At one school, English teacher Tamar, who is also an advocate and co-founder of a parents’ organisation supporting families living with rare diseases, developed her own approach.

When her secondary students initially struggled to grasp the subject, she put them in charge: they researched seven rare diseases, presented their findings to their peers, conducted surveys and created an interactive display where pupils could leave messages of kindness and solidarity.

For Tamar, giving students responsibility made an abstract subject more tangible. Seeing the display fill with handwritten messages from across the school became a moment that will stay with her always.

During one of the Alliance’s school sessions, Zhana’s son accompanied her.The pupils noticed his wheelchair and asked why he used it.

Their question became an opportunity to talk about his condition and, through the story and activities, help them understand why he might experience some things differently.

For Sonia Goerger, author of Merlin and the Children of Genetics series, these conversations connect directly to why she created the books:

“When I created the ‘Children of Genetics’ book series, my ambition was to give children living with rare diseases the opportunity to see themselves reflected in stories that resonate with their experiences, while also helping other children better understand what they go through, fostering empathy, tolerance, and inclusion.”

So far, the Alliance has worked with two schools and five classrooms, leaving copies of Merlin behind so teachers can continue using the story.

Translation, printing resources and certificates, securing funding and coordinating school visits all took time, particularly alongside professional and family responsibilities.But for Zhana, the ambition cannot be measured only in numbers:

”If one child becomes kinder, if one classroom becomes more inclusive, if one family feels understood, then every effort is worthwhile.”

Zhana Chokheli, President of Georgian Alliance for Rare DiseasesIn Lagos, Portugal, KAT6A Portugal’s experience of bringing rare diseases into the classroom also started close to home.

Its President, Anadá Filipitsch Gomes, approached the headteacher of Bairro Operário School, attended by her daughter Constança, who lives with KAT6A syndrome. Together, they developed a programme to mark Rare Disease Day.

At the heart of it was the opportunity for pupils to meet a family living with a rare disease. Constança’s mother visited every class from year 1 to year 4, talking about Rare Disease Day, KAT6A syndrome and her daughter.

“Children have no filters,” she says.They asked difficult questions, but she was struck by how genuine they were.Her message was that Constança is, above all, a happy child: she laughs, cries, has tantrums, enjoys playing and loves hugs.

She experiences the same emotions as other children, while needing more support in some areas of her life.

Drawing on the Rare Disease Day School Toolkit for children aged 6–8, KAT6A Portugal developed an adapted Primary School Toolkit for the initiative.Alongside the children’s book, it gave teachers a way to build on those conversations through drawings, writing and other classroom projects.

At the end of the week, the children’s work was brought together in an exhibition in the school’s multipurpose hall, with pupils also presenting drawings to Constança’s mother as a thank-you for sharing her experience.

Awareness extended beyond the individual classrooms too.

Adapted Rare Disease Day posters were displayed throughout the school, the initiative was shared on the school blog, and KAT6A Portugal used the Illuminations Toolkit to approach the Municipality of Lagos, which agreed to illuminate a municipal building.

Making all of this happen required time.KAT6A Portugal began contacting the school in November, leaving several months to organise activities ahead of Rare Disease Day.

Even with that lead time, fitting everything into the available time and adapting activities for different classes remained the biggest challenge.Collaboration between KAT6A Portugal, school leadership, teachers and staff helped them manage it.

For the organisation, one lesson stood out:

“Nothing replaces direct contact with a family living with a rare disease. That is what transforms curiosity into empathy, and information into inclusion.”

Anadá Filipitsch, President of KAT6A Portugal AssociationThe experience is now shaping what comes next.KAT6A Portugal plans to expand the project across the Júlio Dantas School Cluster, involving pupils aged six to eighteen and adapting activities for each age group.

The organisation is also preparing a new children’s book for younger pupils so that they can add to the existing resources the children have already covered.

Start with your own community. In Georgia, a mother translating a story for her daughter became the beginning of something bigger. In Portugal, one family’s connection with their school opened the door. An initiative does not need to start at scale to make a difference.

Give yourself time. Both organisations began preparing months ahead. Translation, printing, funding and coordination with schools and teachers all take time.

Adapt, don’t simply replicate.A seven-year-old and a seventeen-year-old will not engage in the same way.Younger pupils responded to stories, games and creative activities;older students could research, debate and step into different perspectives through role-play.

The toolkits are there to be used, mixed and adapted.

Make teachers partners.Some of the most interesting approaches came from teachers themselves.Tamar developed activities around her students, while teachers in Portugal turned a story and family visit into projects suited to their classes.

Preparing teachers and giving them room to adapt can help the conversation go further.

Above all, listen to children. They may ask questions adults hesitate to ask. They may take the conversation somewhere unexpected. Let them.

Across Georgia and Portugal, rare disease education looked different in every classroom, and that is part of what these experiences can teach us.The Rare Disease Day School Toolkits can be used as complete lessons or adapted, combined and built upon to suit a particular classroom or community.

Both approaches are equally valid: what matters is finding the way that helps children engage, understand and take part.

Bringing rare diseases into schools is about more than awareness on one day.

By introducing these conversations into the classroom early, we can help children grow up understanding and valuing difference, laying the foundations for a more inclusive society and a more equitable future for the rare disease community.

Explore our school toolkits now!

Melissa Boureghit, Digital Marketing & Communications Junior