Raising healthy children is the biggest wish of every parent, especially to the patients with rare diseases and their families. TFRD launched the “Maternity Care Plan for Rare Diseases” in 2006. The plan provides various services, including genetic counseling, prenatal testings, supplemental nutrients after birth, consolation money, subsidy for newborn screening and supplies. The plan also promotes early diagnosis and treatments of rare diseases. The purpose is to help patients and their families to adjust to the information, and mitigate the subsequent difficulties. The “Maternity Care Plan for Rare Diseases” had served 474 cases, 608 people, and subsidized $6,319,708 NTD since it was first launched in 2006 till the end of 2017.
Out of the 474 cases, 405 babies were delivered smoothly, 69 cases (14.6%) decided to terminate the pregnancy due to family planning (including 48 cases with rare diseases, 1 case being rare disease carrier, 14 cases of miscarriage, and 6 cases with other diseases.) TFRD will give the biggest support and best wishes to the parents despite their decisions after the prenatal checkup and consultation.
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