MEDICAL

Key4OI – Past, Present and Future

Who are you and what is your relationship to OI? I am Dagmar Mekking from the Netherlands. I am a mother of a 15 year old daughter with OI. Also I am the director of Foundation Care4BrittleBones. The purpose of the foundation is to improve quality of life for people with OI through research. What…

READ MORE
EDITORIALS

How does OI impact our lives?

A retrospective study of medical and insurance records from the USA indicates that health care costs for people with a rare condition have been underestimated and are three to five times greater than the costs for people without a rare condition. Why are we not surprised? Finding out more about direct and indirect costs related…

READ MORE
EDUCATIONAL

Why measure quality of life and how?

On September 30th representatives from the OIFE attended a very informative webinar, which explored how the importance of Quality of Life measures is expanding, and the ways patient groups can contribute to the development of disease specific measures. The webinar was organized by the foundation Findacure and the company HealX  and explored the ways to…

READ MORE
RESEARCH

Breathe, Eat, Sleep & Test!

OIers are frequently recommended to lose weight, but no indications or information on the nutritional status in OI are provided. Patients and families, therefore, end up with following a “do-it-yourself” diet, sometimes eating a lot of dairy products with the wrong idea to strengthen the bones and reduce the fractures incidence. Interview with Antonella Lo…

READ MORE
EVENTS

OIFE AGM on Zoom – a success

Each year all delegates are invited to the Annual General Meeting (AGM) of OIFE, which is normally the only time a year the whole Board comes together. At the AGM the Executive Committee (EC) accounts for OIFE’s activities in the past year, future plans and policies are discussed and members exchange news and ideas. Our…

READ MORE
STORIES

The art of being unhappy

Can we be unhappy or do we keep on with that unbreakable spirit which people with OI all seem to have? Why do we want to be so happy? Think about this with me for a while! Imagine: you were a 2 year old toddler and your mother or father asks you to draw something…

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
CONFERENCES

Symposium on stem cells & OI in India

Written by Eva Åström, member of OIFE Medical Advisory Board OI symposium in Vellore India The Centre for Stem Cell Research at the Christian Medical Collage in Vellore, India arranged a two day symposium on OI and stem cell treatment on the 6th – 7th of February 2019. The aim was to provide a platform…

READ MORE
CONFERENCES

Patient Outcomes

Many people & projects are talking about patient outcomes & outcome measures these days. Today at the #iccbh2019 there was a poster presentation from Australia which reported that 1782 different outcome measures were used in 19 different trials about OI. This big variety makes it challenging to compare research across borders and between projects. We…
READ MORE
Translate »