The EURORDIS Open Academy accompanies patient advocates by offering rare disease-specific comprehensive training programmes that empower advocates with the knowledge, skills and confidence they need to engage with different stakeholders as equal partners. Their schools, supported by ERDERA, offer a blended learning approach that includes e-learning courses, webinars, in-person training, as well as research visits and networking…
Written by Malene Sillas, OIFE Board Member. Growing up from childhood, becoming a young adult, I’ve always felt that whatever I do, it feels like I’m the first person to do it. I remember that the first time I felt that way, I was in my second year of high school. The whole class was…
By Dace Liepina, former OIFE Vice President The iCAN (International Children’s Advisory Network) Summit 2022 took place in Lyon, France. It was an event for young people aged 12 to 19 from all around world to meet, exchange ideas and learn more about rare diseases and children’s rights, health and data protection. Many of the…
Interview with Lea Jebali, intern at Rare Diseases International (RDI) Who are you and what is your relationship to OI? My name is Léa, I am 22 years old and I have OI. As a child and teenager, my family and I went to many OI events at the regional association in Germany. When I…
The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey. Written by…
