Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…
Did you know that the first Brussels Rare Disease Week starts tomorrow? #RareDiseaseWeek brings together Members of the European Parliament (MEPs) and rare disease patient advocates from across Europe to exchange ideas and ensure fairer and more inclusive policies for people with #rarediseases. OIFE has three young people representing their countries at Rare Disease Week…
As a follow-up to the survey in July 2020, the OI Foundation has created a second survey focused on how the COVID-19 pandemic continues to impact the OI community in the US and worldwide. The OIFE is supporting the project. Help us know more! Please take a few minutes to complete this new survey today!…
The European member organizations of OIFE virtually came together on February 1st to learn about what’s happening in pharmacological research and how the patient organizations in Europe can work nationally and on a European level to improve access to new and potential treatments for OI. In addition to the delegates, leaders from the European OI-organizations…
Your newborn child is finally here, but when you discover that all is not as it should be, what do you do? – When your child is diagnosed with a rare condition, there are so many things that go through your head. OIFE recommends the publication “Guide for parents after diagnosis” to parents after they…
Today marks the launch of the OIFE awareness campaign connected to Rare Disease Day which takes place on the last day of February each year. What is Rare Disease Day? The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on people’s…
Are you aware of OIFE’s closed Facebook peer group for adults who have OI? We have now reached the great milestone of one thousand members with OI. But there is room for more, so keep telling your OI-friends about it! Who can join? The group is open only for people who have OI themselves. This…
Through our peer groups on Facebook, we sometimes get in touch with people with OI who have symptoms of the rare condition Basilar invagination (BI) without being aware of what it is and what they should do about it. Because there is so little awareness about this rare but serious complication, we would like to…
Are you stuck in your home because of COVID-19? Are you bored? Can’t go to the gym or swimming pool? Don’t worry, a group of volunteers from OIFE are inviting you to join a FREE virtual wheelchair aerobic session/cardio exercise every Sunday and Wednesday on Zoom! What it is: People with OI doing exercises together…
