Have you seen that applications for the 2022 EURORDIS Summer School are open? OIFE have at least five people who attended Summer School before and who graduated as patient experts. Take your patient advocacy to the next level, and learn with EURORDIS – European Rare Diseases Organisation about an exciting range of topics – including…
On September 30th representatives from the OIFE attended a very informative webinar, which explored how the importance of Quality of Life measures is expanding, and the ways patient groups can contribute to the development of disease specific measures. The webinar was organized by the foundation Findacure and the company HealX and explored the ways to…
Animation video explaining OI! Some of you might have seen the animation video that the Swiss OI-organization made to explain OI? From November 12th an edited version with English language and an international twist became available. This in addition to the previous versions in German and French. A big thank you to the Schweizerische Vereinigung…
The Osteogenesis Imperfecta Foundation in the US recently announced the educational program OI TeleECHO Clinic Series. The goal is to build capacity to safely and effectively diagnose and treat osteogenesis imperfecta (OI). The program is a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes). This series uses Zoom videoconferencing, and will take place on…
Today OIFE’s Communication Manager Anna Rossi attended EURORDIS Digital School, which takes place online this year. She has signed up for the entire Digital School 2020, which consists of webinars and eLearning and aims to empower rare disease patient advocates to use digital communication tools to improve the strategic outreach and community-building capacities of their…
Check out the TeleECHO series on rare bone diseases, which is a mix of lectures and case discussions. Previous sessions can be watched online, including: – Genetic Testing in the Diagnosis of Rare Bone Disease – OI Dominant vs Recessive: Impact on Treatment – Non-Accidental Trauma Link to the TeleECHO page of the OI Foundation…
EURORDIS launched Winter School with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research or research infrastructures. The 2nd edition…
The European Medicines Agency (EMA) was founded in 1995, and since then has worked across the EU and globally to protect public and animal health by assessing medicines and by providing independent, science based information on medicines. In 2000, patient representatives joined for the first time as members of one of EMA’s scientific committees. Today,…
OIFE’s honorary member Taco van Welzenis recently attended the International Summer School on Rare Disease Registries and FAIRification of Data in Rome, Italy from Sep. 23rd – 27th 2019. It was a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD). You can download the agenda…
