Patient groups can provide a safe environment where patients and parents could share in absolute security what they have endured in their daily life, stories and tips of medicare experience, and even painful realities about their diseases. The bonds between patients and the patient group is key because what the patients and parents really want is simply knowing that someone understands what they're going through. Just to hear "I understand" can be of tremendous help in releasing the unbearable pressure living with rare diseases.
Also, for those patients and parent who are just diagnosed and hardly know anything about their disease, patient group is a good information provider that can greatly reduce the feeling of confusion and isolation. Patients and parents can find useful information for medicare experiences, social resources, knowledge about the disease and even development of new treatments.
TFRD hopes that through the establishment of patient groups, our services can come even closer to meeting the needs of patients. Eventually the patient groups will pass on the spirit of self-taught skills and experiences to others.
In addition to assisting the establishment of patient support groups, providing start-up funding and helping preliminary operations, we also provide subsidies for the following group activities: patients’ interaction, promotion and advocacy of rare disorders as well as other activities relating to the social and medical welfares. In 2008, TFRD has subsidized 48 patient group and association’s activities subsidizing $3,522,782 NT dollars.
|
