The Children’s Tumor Foundation is happy 
to share this Portuguese guide for children living with NF1, from Beaba.org, an institute out of Brazil that provides clear, objective, and optimistic information about diseases and treatments. Since 2013, Beaba has empowered patients, families, and health professionals through information and communication, increasing engagement with treatments and improving quality of life. The Children’s Tumor Foundation is thrilled to share the news of their latest resource and this message from this wonderful partner organization.
to share this Portuguese guide for children living with NF1, from Beaba.org, an institute out of Brazil that provides clear, objective, and optimistic information about diseases and treatments. Since 2013, Beaba has empowered patients, families, and health professionals through information and communication, increasing engagement with treatments and improving quality of life. The Children’s Tumor Foundation is thrilled to share the news of their latest resource and this message from this wonderful partner organization.The ABCs of NF1
Beaba (be-a-bá) in Portuguese is like ABC. Our ABC is about oncology. Our mission is to demystify cancer and inform in a clear, objective and optimistic way about the disease and treatment. One of our projects is an educational book about cancer, which is distributed for free to every kid diagnosed with cancer in Brazil. The material has more than 260 illustrated terms to explain to children and adolescents what they will go through.
But in Brazil, not only kids with cancer are treated in oncological institutions, but also children with NF1. And many of these children and their families asked for materials. So we decided to co-create a guide about NF1 with patients, families and health professionals. At first we thought of a dictionary explaining the terms and procedures, but we soon realized that a part on genetics and emotions was also necessary as it is a disease with many stigmas and prejudices.
We brought together a team of children, mothers, grandparents, doctors, nurses, psychologists, nutritionists and other professionals, everyone who could contribute to a rich material. We already have knowledge of interdisciplinarity, co-creation and user experience, but we learned a lot and expanded our perspective to other causes that deserve as much attention as cancer.
Our character, Beaba, is a bear, but he is already associated with oncology, he has a catheter in his heart. We needed a new character, so we made several options, around 8 lines of art and the children liked the ounce, as they had the spots on their bodies, like them. But as we have children at different stages of NF1, we created 3 characters, each with different characteristics for everyone to identify with: Nuno, Fibe and Uno. The kids loved it and when they saw it they immediately started asking for stuffed animals (no, we haven’t done it yet).
The objective of the material is to be able to explain in a clear and playful way, without fantasy, about NF1 and provide guidance and support for patients, their families and society, which also needs to learn and become aware, to care for and treat everyone well.
Learn more about Beaba HERE, and download the NF1 Guide at this link.
