CONFERENCES

OIFE Investigator Meeting – a success

On the 17th of November 2023, OIFE hosted the second Virtual OIFE Investigator Meeting for the OI research community. 273 people from 48 countries signed up and more than 160 individuals attended the online event. Attendees were a mix of health professionals, scientists, OI clinicians and a lower number of representatives from industry and patient…

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RESEARCH

EMA-Meeting on Pediatric Research

Written by Miguel R. Molina, member of OIFE’s Medical Advisory Board Miguel R. Molina from our Medical Advisory Board represented OIFE at the meeting of the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) in Amsterdam on November 23rd 2023. The European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA)…

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ADVOCACY

OIFE AT EFPIA PATIENT THINK TANK

November 22nd we had the great pleasure of being invited as observers to the hybrid meeting of the Patient Think Tank of European Federation of Pharmaceutical Industries and Associations (EFPIA). We learned about the work of other European federations, hurdles and opportunities for how patient organizations can work with industry, medicine shortages and patient engagement…

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MEDICAL

Adult Health Toolkit

NEW RESOURCE FOR ADULTS WITH OI Check out the new resource from our friends in the USA, which in our opinion must be the best thing since sliced bread: “The Adult Health Toolkit” made by the Osteogenesis Imperfecta Foundation is: “Information for Adults Living with OI, Their Families, and Medical Professionals” to help you navigate…

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ADVOCACY

Get to know EUCAPA!

The project EUCAPA aims at providing patients, and patient experts, with the adequate knowledge and skills to effectively participate in the Health Technology Assessment (HTA) process. Their courses are designed to empower participants to advocate for themselves and make their voices heard. This will be needed when future treatments for OI comes up for approval…

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STORIES

“OI & Pain” animation film!

Those of you who attended the «Balancing Life with OI» conference in Stockholm for sure remember the opening song «I’ve Got Pains». We have been anxiously waiting to share the animated song with the rest of you, because it was submitted to a film contest. The film with most likes and votes on YouTube wins.…

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RESEARCH

The OIFE Clinical Trial Update

On the 24th of October, OIFE hosted a webinar for the OI community about clinical trials and updates. 235 people from 52 countries signed up. Attendees were a mix of health professionals, scientists, OI clinicians, industry professionals, and individuals with OI and their family members. OIFE is excited to share this current OI study and…

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Flying doctorsSTORIES

Flying OI Experts – Thank you!

Today we would like to express our gratitude to the two OI surgeons Dr. Aldofredo Santana (Venezuela) and Dr. Carlos Pargas (USA) for taking a week off their normally busy schedule and travel all the way from their home countries to Lagos, Nigeria as part of the OIFE Flying OI Expert programme. The 2023 project…

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