Campus Advocacy

As the education rights for the stuednts with disability had been recognized and supported by the public, more and more patients with rare disorders are now pursuing higher degrees. However, despite the availability of physical facilities and resources, patients still face various difficulties in gaining admissions, transitioning, and adjusting to the new school life. In order to assist the graduates with rare disease who plan to enter workplace in the future to step onto the employment track, TFRD joined hands with Taiwan Organization for Disadvantaged Patients to hold "learning lectures on rare disease employment". TFRD will continue to collect the experiences and advices from patients and pay attention to issues about their right to education. The goal of TFRD is to bring the issues to the attention of the government and push it to implement patient’s right for education.

Story-Telling Mother

When children with rare diseases (RD) were first exposed to school life, they are sometimes misunderstood, excluded, or stigmatized by their teachers or peers for their abnormal appearances or behaviors due to RD. To avoid this situation, the TFRD launched "Story-Telling Mother" in 2008, a school-based advocacy program for rare diseases, with a view to helping children in lower grades and kindergartens to know about RD and tell them how to give a hand to their friends with RD.

This is a new attempt made by TFRD to attract younger children. Instead of the way of using dolls in the past, the storytelling mothers wear costumes with a super large storybook to rivet the children’s attention, which we find is more effective. We welcome all elementary schools, kindergartens, or families with RD children who are about to enter school to apply to TFRD for "Story-Telling Mother" at any time.