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/...
As a result, in addition to targeting diseases with very severe inflammatory components such as septicemia, the company is involved in the development of a biomedicine for LCAT Deficiency or Norum's disease. This rare disease, which...
Standing with the rare disease community, our mission is to bring better health and a brighter future, no matter of circumstance or situation
Rare Disease Day marks 1 year of creating Rare in Common podcasts! In honor of this special day, which is celebrated by the rare disease community around the world, we’ve created an episode that highlights some familiar voices from past podcasts and even puts host Andra Stratton in the “...
Rare Disease Day, which is recognized on the final day of February each year—hence, February 29 in leap years, the rarest date on the calendar—shines a light not only on the 6000 or more diseases that affect some 300 million people around the world, but also the medicines and ...
# An unusual mural honors rare disease patients December 14, 2023 Share Taylor Smith can’t count the number of times a passing colleague asked her why she was painting zebras. It was summer of 2022, and Taylor was spending many evenings and weekends at our Covington, Georgia, site where ...
I was honored to be invited to take on the challenge to live ‘A Life in a Day of a patient with FOP’ – but… Rare Disease 03 November 2022 4 mins read A Life in a Day with FOP: from Empathy to Understanding You can never truly understand what it’s like to live with an ...
Rare Disease: Directed by Hoang-Vu Nguyen. With Alvaro Francisco, Kristin Smith, Elisabetta D'Avenia, Max Markham. After a life-threatening emergency, Rocky is diagnosed with a rare disease which causes choking if he utters more than a certain amount of
experience of a rare disease – just like with any chronic condition or disability – isunique to each individual. Even if you get two people with the same condition, the symptoms and severity can vary, while the experience of it day-to-day can be drastically different for a number of ...
Rare Disease Day 2024 You know what today is? Leap Day, February 29th, the rarest day of the year, recognized as Rare Disease Day. In years past I have been on the local news, sharing Cooper’s journey with the community: February 28, 2015 ...