About TAIWAN FOUNDATION FOR RARE DISORDERS
The Taiwan Foundation for Rare Disorders (TFRD) was established 19 years ago. Its primary goal was to secure rare disease patients’ access to medical and proper care, and better medical quality. It was also committed to strengthening public understanding on rare diseases, in order to create a friendly environment for patients. TFRD is also working with the government to establish a rare disease welfare system through lobbying and legislation, to further protect patients’ rights.
Most rare diseases can’t be cured, suffers would live with the disease during their lifetime. Taking care their bodies and making their life wonderful is the most important thing that we can do. So, TFRD has developed lots of direct service programs, such as financial assistance, genetic and nutrition counseling, scholarship, performing workshop, tours, experience activities, home visit service team.
Rare diseases are mostly inherited diseases, meaning that there may be more than one patient in the family, leaving the entire family struggling in financial difficulty. In the hope of alleviating family members’ burden, TFRD expands its service from patients to their family members, by launching programs in which family members can exchange experience on taking care of the patients and learn to relieve their stress. Programs such as psychological counseling sessions, pregnancy counseling and subsidy, counseling for loss, and interpersonal relationship camp for rare disease teens are created to support the families. TFRD has also launched the “Brave Dad Club” for fathers from rare disease families to get together sometimes. TFRD will continue to give its best effort to light up the lives of many rare disease patients.