To always challenge and improve the relevance and quality of our training, the EURORDIS Open Academy has launched a survey open to patient advocates and researchers to learn more about their needs, such as their reasons for engaging in training, main topics of interest, and roadblocks that would prevent them from attending a training event.…
We are thrilled to announce a new session of the online course « Diagnosing rare diseases: from the clinic to research and back« , which will be offered for free! Participants will learn about diagnostic research progress, types of genetic tests for rare diseases, and the impact of having or lacking a diagnosis on patients’ lives over…
This year’s World Duchenne Awareness Day (WDAD) theme is Duchenne: Breaking Barriers. WDAD supports creating a society that provides equal opportunities for all. This year is the 10th edition! People living with Duchenne and Becker muscular dystrophy (DMD/BMD) face physical, healthcare and social barriers. This severely limits their ability to participate fully in community life and activities. …
Apply now to join the 9th Rare Disease Summer School organized by ITINERARE, a recently established University Research Priority Program of the University of Zurich focusing on “Innovative Therapies in Rare Diseases”. The Summer School will take place at the Kartause Ittingen, Warth (Canton Thurgau) close to Zurich from July 04th to 07th, 2023. Please refer to the website for more information on the ITINERARE Rare Disease Summer…
The World Health Organization (WHO) is seeking experts to serve as members of the Strategic Advisory Group of Experts on In Vitro Diagnostics (SAGE IVD). This “Call for Experts” provides information about the advisory group in question, the expert profiles being sought, the process to express interest, and the process of selection. If interested, please…