OIFE EXECUTIVE COMMITTEE
Ingunn Westerheim and Ida Männistö have been re-elected respectively as President and 2nd Vice President of OIFE for the next 4 years.
Webinar on registries
Registries was one of the main topics at OIFE AGM. Mr. George Reynolds (photo) gave a talk about the status on OI-registries in Europe and what will be needed in the future. Patient registries represent a fundamental pillar upon which a number of critical activities are based to understand patient experiences and outcomes, as well…
OIFE at MOCA-meeting
The European Medicines Agency and EU healthcare payers continued their cooperation this week at a meeting in Diemen, the Netherlands, to help improve timely and affordable access for patients to new medicines. Margriet Crezee from the Netherlands represented OIFE to talk about the patient perspective. Topics on the agenda included evidence generation for orphan medicines,…
New OIFE member Ghana
We are happy to announce that the Annual General Meeting has voted in favor of accepting OIF GHANA as a new associate member of OIFE. We now have 35 member organizations in our umbrella. Osteogenesis Imperfecta Foundation Ghana was established in May 2017 and is led by chair Justina Yiadom-Boakye. In the article below you…
OIFE at ICCBH
No time to rest. Tomorrow representatives from OIFE and OIFE’s Medical Advisory Board will be leaving for Salzburg to attend 9th International Conference on Children’s Bone Health which takes place from June 22nd – 25th. Hopefully we will have some time to post about our impressions. OIFE is also part of the ad hoc organizing…
See, Hear, Smile! in Riga
From Friday 14th of June to Saturday 15th, Riga, Latvia was the place to be for the OI community. On Friday, the sun was shining, temperatures were high, people in the streets wore summer clothes and highly-needed sunglasses, stopping every now and then to appreciate the beauty of the city or some refreshments at a…
Video lecture BI
One of the invited speakers at See, Hear, Smile was Suken A. Shah from Wilmington, Delaware, USA who gave a talk about basilar invagination (BI). Unfortunately dr. Shah could not come all the way to Latvia, so the talk was given via a video lecture. The video lecture of Dr. Suken A. Shah’s talk about…
Abstracts See, Hear, Smile!
A great topical meeting has come to an end. More than 82 people from 22 countries met in Riga, Latvia from June 14th – 15th to discuss and learn about eyes, ears and teeth of people with OI. The event had a lot of positive feedback already, and we feel we succeeded in creating an…
See, Hear, Smile! – Day 2
See, Hear, Smile! – a topical meeting on osteogenesis imperfecta (OI) gathered an international panel of experts and patient representatives from the 14th to the 15th of June in Riga, Latvia to discuss dental, hearing, vision and craniofacial issues in osteogenesis imperfecta (OI). The meeting gathered more than 80 participants from 22 countries. These are…