The EURORDIS Open Academy School on Medicines Research & Development (Summer School) aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development. Since 2015, researchers are also welcome to attend the School. Also this year people connected to OIFE were attending EURORDIS Summer School…
Written by Lars Romundstad, OIFE volunteer from Norway EURORDIS is the umbrella association for organizations for rare conditions in Europe. And the 26th and 27th of May 2023, OIFE was represented at the EURORDIS Membership Meeting in Stockholm. Lars Romundstad, represented the OIFE together with Rebecca Tvedt Skarberg, who is also a Board member of…
On Rare Disease Day, 48 Members of the European Parliament (MEPs) wrote to the President of the European Commission, Ursula von der Leyen, calling on her to deliver a comprehensive European strategy on rare diseases. The goal is to improve the lives of the 30 million European citizens living with a rare disease. The letter…
February 7th OIFE had the pleasure to meet (online) the founder of a Vietnamese organization for rare diseases (VORD), which focuses (at the moment) on OI, SMA and Duchenne. Their co-founder Ly Ngo has OI herself and they have a lot of collaboration with scientists and other stakeholders. You can find them online on: https://www.rarediseases.vn/
December 15th OIFE was represented at a webinar organized by the European Joint Programme on Rare Diseases (EJP RD) together with several OI professionals. The webinar was about their new call focused on “Natural History Studies addressing unmet needs in Rare Diseases”. If you know about researchers who would be interested in collaborating on an…
Three times our life was divided into “Before” and “After”… Written by Lyubov Petrova, mother of a daughter with OI & chair of the Ukranian OI-organization. The Diagnosis First it was my daughter’s diagnosis with Osteogenesis Imperfecta (OI)… “Before” was joy of the birth of a long-awaited beautiful baby-daughter, registration to the best kindergarden in…
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…
November 9th and 10th OIFE was represented by Ingunn Westerheim at the Council of Federations (CEF) meeting of EURORDIS – the European umbrella organization for rare conditions. The socalled CEF is a forum where umbrella organizations and federations for rare conditions in Europe come together to learn about news in the European rare disease field…
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…
