2024年2月29日是第十七届国际罕见病日(Rare Disease Day)。以“关注罕见、点亮生命之光,弱有所扶、践行人民至上”为主题。 罕见病目前尚无全球统一的定义,《中国罕见病定义研究报告2021》指出,新生儿发病率小于1/万、患病率小于1/...
关注细节 了解自己 防微杜渐 传递关爱 上万种罕见病与每个人都有千丝万缕的联系 #世界罕见病日(Rare Disease Day) #国际罕见病日 罕见病友临行疾呼:"十万例罕见病患者基因组学测序计划"GSRD-100Kᒼ研究项目罕见病患者知情同意书 华西罕见病研究院GSRD‐100Kᵂᒼᴴ版本号2.3 2022年7月20日 四川大学华西...
not just on Rare Disease Day but throughout the year. She is also a true ambassador for the north-east of England and we look forward to continue working with both Liz and her team to ensure investment in the mitochondrial research that provides hope for ...
Standing with the rare disease community, our mission is to bring better health and a brighter future, no matter of circumstance or situation
Marking the World Rare Disease Day, Health Commissioner Stella Kyriakides and health ministers called for stronger coordination around rare diseases with high hopes on European Reference Networks (ERNs).
in support of rare disease day, we're excited to launch part 2 of our video series; extraordinary lives: advancing change in rare diseases.why is raising awareness of rare diseases so... extraordinary lives: advancing change in rare diseases (part 1) extraordinary lives:...
The last day of February every year is “World Rare Disease Day.” People who decided it reportedly thought about the rarity of February, the last day of which ends on the 29th every four years, to symbolize the experiences of people with rare diseases. Korea had celebrated it on May 24...
Historic University, in Marburg, Germany, glowed in the lights of Rare Disease Day on Tuesday night. Elsewhere in the world, iconic structures such as the Tokyo Tower in Japan and the Burj Khalifa, a skyscraper in Dubai, United Arab Emirates, were illuminated for the annual occasion. ...
First, Beijing’s meticulous and scrupulous administration of pandemic prevention and disease control might provide a useful reference for policy-makers all over the world when they are faced with a dilemma between promoting exchange...
Rare disease drugs (orphan drugs) approved by NMPA before June 30, 2022. *The six conditions above only apply to drugs currently outside the NRDL. For NRDL-listed drugs which have major indication changes or seek contract renewal to stay in NR...