ADVOCACY

ERNs – CALL FOR NEW FULL MEMBERS

From October 1st 2019 the European Reference Networks (ERNs) are opening a call for applications for new full members. The call is open until 30th of November 2019. The healthcare providers in Europe have two months from today to apply to become a member of one of the 24 ERNs, including ERN BOND which OI…

READ MORE
CONFERENCES

OIFE in Barcelona

Today OIFE is represented by vice-president Dace Liepina at the 28th EURORDIS Round Table of Companies Workshop in Barcelona – “A New PARADIGM of Meaningful Patient Engagement in the Life Cycle of Medicines”. The event is an annual seminar for representatives from industry (pharma) and from EURORDIS and their member organizations. This year, the workshop…

READ MORE
CONFERENCES

The Voice of People with OI

Do you want help us establish the voice of people with OI? OI Community Sounding Board The organizers of the conference Quality of Life 4 OI in Amsterdam are assembling an OI Community Sounding board (webinar) to test the key messages from the OI community, which will be shared during the Amsterdam conference. This is…

READ MORE
EDUCATIONAL

Registries in Rome

OIFE’s honorary member Taco van Welzenis recently attended the International Summer School on Rare Disease Registries and FAIRification of Data in Rome, Italy from Sep. 23rd – 27th 2019. It was a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD). You can download the agenda…

READ MORE
CONFERENCES

Join Quality of Life 4 OI!

Join the conference Quality of Life 4 OI, taking place from 22-25 November 2019 in Amsterdam! The Conference organized by Foundation Care4BrittleBones together with OIFE, OIF, ERN-BOND and BBDC will provide a platform to engage on clinical practice and research aimed at increasing quality of life for people with OI. The conference discusses topics like…

READ MORE
EDITORIALS

The time is now

For a number of years treatment of OI was mostly limited to bisphosphonates, surgical interventions and physiotherapy. Well basically it still is, if you think of approved and standardized treatment (if such a thing exists in OI). The group of drugs called bisphosphonates actually celebrates its 50th anniversary this year. And for the last 25-30…

READ MORE
ADVOCACY

Can you help us create good registries?

Why do we need registries for OI? Several new drugs are being investigated for OI at the moment. If some of these end up on the market, it will be important to develop registries to monitor potential side effects and long term effects of these drugs. Registries are also important when it comes to learning…

READ MORE
ADVOCACY

OIFE input for EU research

What do you think are the most pressing challenges that EU funded research and innovation should tackle for the rare disease community? The European Commission is preparing the implementation of Horizon Europe, the next EU research and innovation programme (2021-2027) with a budget of €100 billion, in an intensive co-design process. As part of the…

READ MORE
CONFERENCES

OIFE at China-Dolls Conference

From August 3rd – 6th 2019 the Chinese OI society (China-Dolls) celebrated their 10th anniversary in Yantai in the east of China. They organized a medical conference two days before the meeting. During this conference three international experts (Dr. Frascini from Italy, Dr. To from Hong Kong and Dr. Semler from Germany) gave lectures and…

READ MORE