ADVOCACY

Discrimination in Critical Care Guidelines

The rare disease community raises alert over discrimination in #CriticalCare guidelines during COVID-19 pandemic. Read the statement from EURORDIS to see proposals for healthcare practitioners on how to avoid discrimination against people living with a rare disease and provide optimal care during #COVID19 OIFE supports EURORDIS in their view that critical care guidelines must be non-discriminatory and should be…

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MEDICAL

COVID-19 – info for people with OI

The OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page oife.org/covid19 Are people with OI in the risk group?  We…

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OIFE

Virus Workout every Sunday

Are you stuck in your home because of COVID-19? Are you bored? Can’t go to the gym or swimming pool? Don’t worry, OIFE is inviting you to a virtual wheelchair aerobic session every Sunday! On March 29th we will try a moderate intensity workout. On April 5th we will repeat the high intensity workout. Time:…

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RESEARCH

Rare Disease Research Challenge

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions (including all 24 ERNs) from 35 countries. On March 3rd Dace Liepina and Ingunn Westeheim was supposed to represent OIFE at a networking event in Paris related to the Rare Diseases Research (RDR) Challenges Call. We were particularly interested in challenge nr. 3 “Characterize Rare…

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EDUCATIONAL

OIFE at EURORDIS Winter School

EURORDIS launched Winter School with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research or research infrastructures. The 2nd edition…

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STORIES

Artists with OI: Matt Shilcock

Who are you and what do you do? My name is Matt Shilcock, I am a contemporary dancer and performing artist from Adelaide, South Australia. I have been creating and performing dance theatre works in festivals and locations around the world over the last 10 years. I predominately perform Contemporary Dance, but living with OI,…

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ADVOCACY

EMA & EURORDIS Summer School

The European Medicines Agency (EMA) was founded in 1995, and since then has worked across the EU and globally to protect public and animal health by assessing medicines and by providing independent, science based information on medicines. In 2000, patient representatives joined for the first time as members of one of EMA’s scientific committees. Today,…

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Get involved in Rare Disease Day!

Last chance to get involved in Rare Disease Day! Have you noticed that OIFE has had a Rare Disease Day campaign going in our social media (Facebook, Twitter and Instagram) the last 1,5 week? Through various posts our goal has been to raise awareness about rare diseases, about osteogenesis imperfecta and about OIFE. Make sure…

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Rare 2030 needs you!

Rare 2030 is seeking young rare disease patient advocates to contribute to the future of rare disease policy. If you are 18-30 years old and living with a rare disase yourself, a sibling or a student in a related field you can get involved. Motivated by the rare disease cause? Interested in advocacy? Rare2030 project is…

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