By Dr. Antonella Forlino, member of OIFE’s Medical Advisory Board Report from OIF Investigator meeting 2019 It was a great pleasure to be sponsored by OIFE to participate at the 19th Annual OI Foundation (OIF) Scientific Meeting held in Chicago on April 10-12 and co-chaired by Dr Marini and Dr Raggio. The American Scientific Community…
2 Weeks left until Early Bird Deadline! Are you a professional who’s interested in eyes, ears and teeth of people with OI? Or basilar invagination (BI)? Do you yourself have issues related to this? Then we invite you to take part in our seminar See, Hear, Smile! from June 14th – 15th in Riga, Latvia.…
OIFE’s 26th Annual General Meeting (AGM) will be held in Riga, Latvia from June 15th – 16th following the topical meeting See, Hear, Smile! If you plan to take part in both the topical meeting and the OIFE AGM, you need to register for BOTH events separately. Time OIFE AGM: June 15th 14.30 – June…
The OIFE Youth event will take place between 23rd to 27th, October 2019 in Bilbao, Spain. The goals of the OIFE Youth Event are: – sharing experience & ideas across borders – networking and getting to know young people with OI in other countries – social activities and fun – to create awareness about OIFE…
HAVE YOU EVER RECEIVED TREATMENT FOR YOUR OI? Then OIFE & EURORDIS is interested in hearing from you. Take 10 minutes to complete the new #RareBarometer survey on your experience of rare disease treatments and share your views. Survey available here in 23 languages: http://bit.ly/eurordis-survey NOTE! New this time is that you don’t have to…
OIFE had several representatives in Brussels attending the 3rd EURORDIS Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies (https://www.eurordis.org/3rd-access-symposium) in February 2019. During the conference there were also opportunities to network. Here with representatives from Open App, Bindeweefsel.Be and Mereo. What was interesting to know? Our Honorary Member Taco van Welzenis gives an…
One of OIFE’s goals is to represent our members on an international level and be the voice of people with OI and their families. One of our representatives is Rebecca T. Skarberg. She is the voice of people with OI in the European Reference Network for Rare Bone Disorders (ERN-BOND), who had their annual technical…
By Lars Nesset Romundstad, Translation: Ingunn Westerheim From October 25th to 28th 2018 Kristian and I traveled from Norway to Århus in Denmark to attend the annual OIFE Youth event. The traditional youth event took place in the Pindstrup Centre and was organized by the Danish girls Malene, Ninna, Matilde and Marie, who’s one of…
The European Patient Forum is happy to share with you an exciting opportunity for the 3rd edition of the Summer Training for Young Patients Advocates. The theme of 2019 is ‘Shaping the Future of Patient Advocacy’. Over the course of four days, young people will be expanding their skills and maximize their leadership potential. The…
