中国红基会成长天使基金资助小胖威利综合征患儿近700人次
中新网北京3月3日电 (侯力新 张素)记者3日从中国红十字基金会(下称“中国红基会”)采访获悉，成长天使基金自2018年起持续为2周岁内小胖威利综合征患儿资助药品，为经济困难的患者家庭提供资金支持。
小胖威利综合征是一种罕见遗传性疾病，患儿出生后会出现肌肉无力、发育迟缓、喂养困难等症状。目前，该病尚无根治方法，但可以通过药物治疗缓解症状，改善患儿生活质量。
中国红基会成长天使基金项目负责人介绍，该基金自2018年成立以来，已累计资助小胖威利综合征患儿近700人次，发放资助金额超过1500万元。基金主要用于资助患儿所需的生长激素、促甲状腺激素和促性腺激素等药品，以及其他必要的医疗费用。
该负责人表示，小胖威利综合征患儿的治疗费用较高，给许多家庭带来沉重负担。成长天使基金的资助旨在减轻患者家庭的经济压力，帮助患儿获得及时有效的治疗。
据了解，成长天使基金是中国红基会联合华润三九医药有限公司共同发起的公益项目，旨在为罕见病儿童提供医疗救助和关爱服务。截至目前，该基金已资助包括小胖威利综合征在内的10余种罕见病，惠及患儿超过1万人次。
英语如下：
**Headline: Red Cross Foundation Angel Fund Helps 700 Children Fight Prader-Willi Syndrome**
**Keywords: Funding, Rare Disease, Medicine**
**News Content:**
Beijing, March 3 (Xinhua) — TheRed Cross Society of China’s (RCSC) Growth Angel Fund has provided funding for medicine to nearly 700 children with Prader-Willi syndrome under the age of two since 2018, offering financial support to families facing financial difficulties.
Prader-Willi syndrome is a rare genetic disorderthat causes symptoms such as muscle weakness, developmental delay, and feeding difficulties in children after birth. Currently, there is no cure for the disease, but medication can alleviate symptoms and improve the quality of life for patients.
The head of the RCSC Growth Angel Fund project said that since its establishment in 2018, the fund has provided funding to nearly 700 children with Prader-Willi syndrome, disbursing over 15 million yuan in funding. The fund is mainly used to cover the costs of growth hormone, thyroid-stimulating hormone, and gonadotropin-releasing hormone, as well as othernecessary medical expenses.
The official said that the treatment costs for Prader-Willi syndrome are high, placing a heavy burden on many families. The Growth Angel Fund’s funding aims to alleviate the financial pressure on families and help children receive timely and effective treatment.
It is understood that the Growth Angel Fund is a public welfare project jointly launched by the RCSC and Hua潤 Sanjiu Pharmaceutical Co., Ltd., which aims to provide medical assistance and care services to children with rare diseases. To date, the fund has funded more than 10 rare diseases, including Prader-Willi syndrome, benefiting over 10,000 children.
【来源】http://www.chinanews.com/life/2024/03-03/10173395.shtml
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