EURORDIS Membership Meeting (EMM) brought together leading rare disease advocates from across Europe. For the first time, the biennial event was held in Riga – a city whose history of resilience and civic action offered a fitting backdrop for discussions on strengthening the voice of the rare disease movement. Across two days of workshops, strategy…
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…
Armaana Ahmad Paediatric Dentistry, Eastman Dental Hospital London I am a Paediatric dentistry and junior researcher interested in dental anomalies in children with OI. I don’t have a formal relationship with OIFE but would like to! I think the Topical Meeting was excellent. Well thought out content allowed networking and sharing of current research with…
The See, Hear, Smile conference was followed by OIFE’s Annual General Meeting (AGM) from June 15th – 16th in Riga, Latvia. In addition to the business part of the meeting, we also shared good examples between our member organizations. Dr. Eva Åstrøm from Sweden gave an update on ERN BOND and the company Mereo Biopharma…
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…
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! – 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…
The topical meeting See, Hear, Smile! hosted by OIFE gathered an international panel of experts and patient representatives from the 14th to the 15th of June in Riga, Latvia. The purpose was to discuss dental, hearing, vision and craniofacial issues in osteogenesis imperfecta (OI). The meeting gathered more than 80 participants from 22 countries. These…
