Module I of the curriculum is now available! We are currently testing our materials in elementary school classrooms. If you would like to be notified when the rest of the materials are available, please click the button below.
Thirty million U.S. Americans (1 in 10) have at least one rare disease and more than half of those are children, yet most of the rare disease educational materials that are available are for high school or college level students and medical students and physicians. Prior to development of RareDiseaseEd, there were no courses for children about rare disease. When about 15 million U.S. children are affected by these diseases, they ought to have access to materials that help them and their peers to understand what they are going through. Rare disease can be an incredibly traumatic and isolating experience for a child and by giving them the knowledge and background provided in this course, we are hoping to help ease their burden and provide the awareness and acceptance among their peers that is so desperately needed for every child with a rare disease.
Our curriculum is freely available to anyone who is interested in using it. All we ask is that you cite our website and provide participants with the link to access our resources and additional materials.
How does our curriculum work?
RareDiseaseEd is an entirely free curriculum for grades K-5 that teaches children about the scientific causes, types, symptoms, demographics, and emotional challenges of rare disease. The lessons herein are constructed to be completed in a week, though the course may be expanded or condensed by discretion of the teacher and taught at any time of the year. Most lessons can also function as stand-alone lessons or be used at home with a parent and child together.
The course is split up into three modules, each with a central theme. A Before & After assessment is also available to gauge rare disease knowledge of students prior to starting the course as well as after completion of the course. The first module focuses on rare disease causes, with lessons on cells, cell function, mutations (the cause of 80% of rare diseases), and the effects of mutations on the body. The second module focuses on the how’s and who’s of rare disease, with lessons on types and symptoms of and treatments for rare diseases, as well as a visual demographics representation to illustrate the huge population affected by rare disease. The third and final module is focused on building empathy and awareness, with lessons that encourage students to consider the feelings and emotions of those with rare disease, and the best ways that they can help.
Throughout the writing of this course, care was taken to use simple language, descriptive analogies, and engaging visuals to illustrate each topic of rare disease at a K-5 level, giving young children access to educational materials they never had before. Hands-on activities are included with each lesson to keep students engaged with the text. For teachers, Common Core educational standards, as well as assessment plans, and additional resources are included with each lesson. Teachers are also provided with a Backgrounder for each module, which includes key themes of and detailed information on the module’s topic, to better prepare them to teach and answer students’ questions.