”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...
”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...
Rare Disease Day 2014: Recognizing Rare Diseases and Empowering Patients to Become Self-Advocates 来自 questia.com 喜欢 0 阅读量: 15 作者: Brandpoint 摘要: (BPT) - For the past six years, international Rare Disease Dayhas served as a day on which......
Standing with the rare disease community, our mission is to bring better health and a brighter future, no matter of circumstance or situation
This February 28 is Rare Disease Day. With so many things going on in the world around us, it’s very easy to put off important things like health. That’s why the last day of February each year we mark our calendars to bring awareness to rare diseases. An average of 1 in 20 ...
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/...
Rare Disease Day was created due to the lack of treatment, social networks, and support for many rare diseases. On Rare Disease Day, people around the world come together to raise awareness of rare diseases and the impact of those affected. Today, we want to share more about Rett Syndrome...
Rare Disease Day: Opportunities for LibrariansDana L. Laddhttps://orcid.org/0000-0003-1440-2871Dana L. Laddhttps://orcid.org/0000-0003-1440-2871Dana L. Laddhttps://orcid.org/0000-0003-1440-2871Dana L. Laddhttps://orcid.org/0000-0003-1440-2871...
When they hear “rare disease,” they take it to mean “deadlier” or “more transmissible.” But that’s not necessarily the case; the fact that they’re rare means that they are not easily transmissible. If they were, they would not be rare. However, that’s not a hard-and-fast ...
Download PDF From View current issue Submit your manuscript Susan M. Gasser, James R. Lupski, Yann Le Cam & Olivier Menzel 901 Accesses 3 Citations 11 Altmetric Explore all metrics In the last leap year in 2008, 29 February was chosen to mark Rare Disease Day by EURORDIS, the ...