“We feel informed, motivated and supported!” Background Through our activities the last couple of years, we have realized that our member organizations are struggling more and more with various challenges. These include knowledge of and strategies concerning communication, fundraising, advocacy, recruitment of new members and board members. It was the view of the OIFE Board…
Orphanet Journal of Rare Diseases has published a paper seeking to estimate the epidemiology of osteogenesis imperfecta (OI) in Spain: ‘Current situation of osteogenesis imperfecta in Spain: results from a Delphi study’. As well as an estimate of the prevalence and incidence of OI in Spain, the results complement the available evidence of the burden…
For the Artists with OI-column in the OIFE Magazine, we interviewed Felipe Mateos, a stand-up comedian from Spain. Tell us a bit about yourself! I’m 27 years old and I’ve been a stand-up comedian for eight years. Little by little I am better known in Spain (Television, radio, social networks…) and I have many followers…
Researchers from the Share4Rare project in Spain published a book about osteogenesis imperfecta (OI) some years ago. Now it’s available online (for free) in English language as well. The Spanish organization Ahuce also provided input to the book. You can access the book by clicking here.
The winner takes it all! What a coincidence! Some time ago OIFE had prepared an interview with Pablo Ostarek, an artist with OI, which you can read below. And this week, we congratulate him for winning the 1st prize in the International Rare Disease Film Festival for his short film “This is not a person”!…
