Perhaps not a big surprise, but the OIFE Executive Committee has in collaboration with the local organizers decided to cancel the OIFE Youth Event 2020 that was supposed to take place end of August, because of the Corona virus situation. Our plan is to do the OIFE Youth Event in Poland i 2021 and in…
Each year all delegates are invited to the Annual General Meeting (AGM) of OIFE, which is normally the only time a year the whole Board comes together. At the AGM the Executive Committee (EC) accounts for OIFE’s activities in the past year, future plans and policies are discussed and members exchange news and ideas. Our…
The aim with our #wish4OI campaign was to collect the wishes of the OI community to get to know what they wish there could be more knowledge and awareness about in the future about OI. It could be anything from treatments to policy work, from very basic to complicated issues you want to address or…
On May 5th 2020 OIFE will be the host of the periodical #tuesdaytakeover organized by Rare Revolution Magazine. Rare Revolution Magazine Rare Revolution Magazine gives a voice – and a platform – to patients, industry professionals, clinical and healthcare providers and the patient groups and charities that support over 8000 different rare conditions. Created by…
Save the date! May 6th is Wishbone Day the International Day of OI celebrated all over the world by the OI communities to improve and boost the awareness around OI. We have seen many incredible ways to celebrate this day, some created by individuals and some guided by National organizations’ initiatives. As the international umbrella for…
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, OIFE is inviting you to a virtual wheelchair aerobic session every Sunday! On March 29th we will try a moderate intensity workout. On April 5th we will repeat the high intensity workout. Time:…
The title and graphic identity of the Latvia meeting Jean Moitry and I attended in Riga is a reference to the Chinese tale of the three monkeys. One of them doesn’t see, the second doesn’t hear and the third hides his mouth. This is an optimistic message because the meaning of the parable is that…
Dear friends & contacts of OIFE. It’s Christmas Eve in Switzerland and I’m taking a moment before family dinner to look back on the year that has passed. To be honest it has been 12 months of ups and downs in the OIFE. To start with the saddest part, it has been a challenging and…
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…
