MEDICAL

Key4OI: An Outcome measurement set

For the last 2 years experts from many different countries have been working together in Project “Key4OI”. The aim of this project was to develop a core outcome set for OI, children and adults. The focus is on: Outcomes that are relevant for most people with OI, worldwide, througout a life time. Input was provided…

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MEMBERS

Founder of Help for OI (HOI) has passed away

Obituary Hinke Panjer, founder of Help OI (HOI) Hinke Panjer, founder of the Help OI (HOI) foundation in the Netherlands passed away on October 24th, at the age of 70 years. Hinke was born 12th of May 1949. Hinke had no easy life, but she developed a great passion to help other people living with…

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ADVOCACY

New members of ERN BOND

The call for healthcare providers to join the 24 existing European Reference Networks closed in December 2019. A total of 841 applications for ERN membership were received. 29 applications were submitted for becoming a member of the ERN for rare bone diseases (ERN BOND). Please check the latest updates for the applicants on the EU…

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OIFE

Seasonal Greetings from OIFE

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…

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STORIES

Artists with OI: Veronica Tulli

Interview and translation: Anna Rossi Can you introduce yourself? My name is Veronica Tulli and my stage name is LuluRimmel. I live in Rome, Italy. I am a singer, songwriter and performer. And I am quite confident in saying this. But I do not hide that at least in Italy, this is quite a bold…

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ADVOCACY

Call for proposals for research projects

The European Joint Programme on Rare Diseases (EJP RD) has made a preliminary announcement about the upcoming 2020 call for proposals for pre-clinical research to develop effective therapies for rare diseases like OI. A number of national and regional funding organisations will participate in the call, alongside the European Commission and the EJP-COFUND action, to…

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CONFERENCES

Report from Quality of Life 4 OI

OI is more than Fractures, Surgeries and Pain! As a currently-elected family representative by our regional OI-association comprising the states of Hessen, Saarland and Rheinland-Pfalz (Germany)-, I was honored to take part in the highly-anticipated conference ‘QUALITY OF LIFE 4 OI’ this year. The conference took place in Amsterdam from the 22nd-25th November 2019. This…

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CONFERENCES

Marie’s Youth Corner

Impressions from the “QualityofLife4OI” Conference I attended the QualityofLife4OI conference in Amsterdam last month. I wasn’t sure if it was a good idea to go, because I had to move apartment two days after the conference. Luckily I decided to go and it was such an amazing trip and I managed to pack my apartment…

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ADVOCACY

Rare2030

The Rare2030 Panel of Experts (nearly 200 key opinion leaders in rare disease policy) met in person for the first time in Brussels on November 7th to discuss trends in rare disease diagnostics, treatment, care and social support and how they may lead to future policy scenarios. Rebecca Tvedt Skarberg (ePAG in ERN BOND suggested…

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