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/...
今天是国际罕见病日 | 2月29日是太阳和地球的时差日,也是国际罕见病日(Rare Disease Day),以这个四年一次的日子,意寓发病率万分之一甚至百万分之一的罕见病的极其罕见。 罕见病缺乏医疗手段,也缺乏社会关注,患有罕见病的家庭往往会陷入到无助当中。关注罕见病,促进罕见病人得到及时科学的医治,是社会发展进步的...
”As we approach Rare Disease Day 2025, I urge you to join me in raising awareness about Turner syndrome and other rare conditions. Let us work together to amplify the voices of those with rare diseases and ensure that they have access to the care and support they need to thrive.’ Read...
A rare disease is a disease that affects only a small portion of the population. However, rare diseases are ...
Rare Disease Day, observed on the last day… Feb 27, 2025|Hematologic Disorders,Kidney And Urinary Diseases,Treatment Caplacizumab Combination Therapy in Patients With Acquired Thrombotic Thrombocytopenic Purpura Alix Arnaud, Director of Health Economic and Value… ...
”As we approach Rare Disease Day 2025, I urge you to join me in raising awareness about Turner syndrome and other rare conditions. Let us work together to amplify the voices of those with rare diseases and ensure that they have access to the care and support they need to thrive.’ Read...
Kim Moran, Head of U.S. Rare Disease at UCB Recognizing Rare Disease Day Every Day Jeff Boutelle, Head, U.S. Rare Disease Strategy Learn More UCB strengthens its robust rare disease pipeline with the acquisition of Zogenix Learn More ...
”As we approach Rare Disease Day 2025, I urge you to join me in raising awareness about Turner syndrome and other rare conditions. Let us work together to amplify the voices of those with rare diseases and ensure that they have access to the care and support they need to thrive.’ Read...
2024-02-29 🌍Today is Rare Disease Day, a globally coordinated movement dedicated to addressing rare diseases. This initiative is committed to achieving equity in social opportunities, healthcare, and access to diagnosis and therapies for individuals living with rare diseases. Despite the ter...
29-Feb-2024 On Rare Disease Day - this year falling on the rarest of days, 29 February - we’re proud to show our support for the rare disease community. There are over 300 million people globally living with a rare disease, of which 95% still don’t have...