For children with rare diseases and their parents, entering school requires more preparation and evaluation on choosing regular or special class, or selecting schools. We start our “Schooling Counseling Service” which provides pre-school conference that integrates relevant information and educational resources. Parents have more information when selecting the most suitable school for their children.
As for rare disease students, we hold campus advocacy speeches to patients’ fellow classmates and even teachers. In this manner, we hope to reduce unfriendly and unfair treatment due to lack of information regarding rare diseases and help the patients to enjoy their school life with their classmates without worries.
The plan for a "Friendly Learning Environment for Rare Disease Patients" is mainly targeted towards the classmates, teachers, workers and the medical personnel of the school that the rare disease patient attends. There are three different types of education and advocacy activities:
Campus-wide activities for the education and advocacy of rare disorders
Targeting elementary schools and on a voluntary basis, the foundation works alongside the school's health education week and distributes rare disorder posters and single leaflets.
Class-level activities for the education and advocacy of rare disorders
Targeting the class level of the rare disease patient, we assist the classmates and teachers of the sufferer to understand rare disorders and thus create a friendly learning environment.
Special education teachers research and learning camp activities
Targeting special education teachers, we provide teachers assistance through the exchange of ideas and experiences. Activities will be held by genetic counselors and social workers, wherein they will explain the basics of rare disorders and the use of information networks. In a professional manner, we aim to lessen the gap between teachers and relevant medical students and rare disorders.
Mommy's Story Hour campus advocacy
Mommy’s Story campus advocacy project is to teach very young children about rare disease and how to get along with rare disease patients by reading stories to them.
In 2008, we have had 65 campus fairs and 13,560 people have attended campus advocacy activities. |
