Watch the DAYBUE® (trofinetide) in Practice Video Series to Hear Expert Insights on the First Treatment for This Rare Disease Rett syndrome thought leaders discuss how DAYBUE™ (trofinetide),… Jan 31, 2025|Advocacy,Congenital And Genetic Conditions,Heart Diseases ...
Find more insightful blog posts related to Rare Disease Day on theSpringer Nature Research Communitieswebsite, and in the summary bloghere. Patient involvement in clinical trials: a paradigm shift in research New Editorial by Editor-in-Chief, Francesc Palau, and Managing Editor Jordi Pijuan, highl...
Find more insightful blog posts related to Rare Disease Day on theSpringer Nature Research Communitieswebsite, and in the summary bloghere. Patient involvement in clinical trials: a paradigm shift in research New Editorial by Editor-in-Chief, Francesc Palau, and Managing Editor Jordi Pijuan, highl...
Rare Disease Day 2025 February 28, 2025 in the WorldRare Disease Day is observed on February 28, 2025. Each year it takes place on the last day of February, making its occurrence February 29th in a leap year. Established in 2008 by EURORDIS (European Organisation for Rare Diseases) and ...
As a rare disease genetic counselor – who both has a rare genetic condition and serves rare disease patient populations as a provider – I have aRare Disease DayPublic Service Announcement for you: Do not order Direct-to-Consumer testing and please actively discourage other providers and patients...
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 ...
Standing with the rare disease community, our mission is to bring better health and a brighter future, no matter of circumstance or situation
The European respiratory journalHarari S, Lau EM, Tamura Y, et al. Rare ( pulmonary) disease day: "feeding the breath, energy for life!". Eur Respir J 2015; 45: 297-300.Harari S, Lau EMT, Tamura Y, et al. Rare (Pulmonary) Disease Day: "Feeding the breath, Energy for life!" ...
The WCMR team are all incredibly grateful to Liz for her passion and commitment to support the rare disease community, 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 ...
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...