My name is Justina Yiadom-Boakye, a mother to a child living with Osteogenesis Imperfecta. I am also the founder and the current President of OIF-Ghana, who recently became a member of the OIFE. Though it might be difficult to give the exact number of people living with the condition here in Ghana, however, using the…
On November 8th Céu Barreiros (treasurer) represented OIFE at the Council of Federations-meeting in Brussels hosted by EURORDIS. The Council of European Rare Disease Federations (CEF) provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases. The council also allow federations to work together on…
Mr. Pablo Ostarek from Spain has OI himself and is a film maker by profession. Now he has a new project, with the topic of overprotection, something many people with OI can relate to. We have asked him to tell us a little bit about his project and his intentions behind the film Esto no…
We struggle to find the words to announce the death of OIFE’s 2nd Vice President Ida Männistö (30) from Finland. Ida passed away in her own home on October 19th 2019. Ida was curious, smart, fearless, engaged and never afraid of new challenges. She lived life to the fullest and we feel so very sad…
The 14th International Skeletal Dysplasia Society (ISDS) meeting took place in Oslo, Norway from the 11th -14th September 2019. OIFE was not present, but we asked Dr. Antonella Forlino (see photo in report below), who’s a member of OIFE’s Medical Advisory Board to report back from the sessions that were most interesting for OI. On…
From October 1st 2019 the European Reference Networks (ERNs) are opening a call for applications for new full members. The call is open until 30th of November 2019. The healthcare providers in Europe have two months from today to apply to become a member of one of the 24 ERNs, including ERN BOND which OI…
Today OIFE is represented by vice-president Dace Liepina at the 28th EURORDIS Round Table of Companies Workshop in Barcelona – “A New PARADIGM of Meaningful Patient Engagement in the Life Cycle of Medicines”. The event is an annual seminar for representatives from industry (pharma) and from EURORDIS and their member organizations. This year, the workshop…
Do you want help us establish the voice of people with OI? OI Community Sounding Board The organizers of the conference Quality of Life 4 OI in Amsterdam are assembling an OI Community Sounding board (webinar) to test the key messages from the OI community, which will be shared during the Amsterdam conference. This is…
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…
