ADVOCACY

The IMPACT Survey is live – spread the word!

The IMPACT Survey is a joint initiative between the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE), the OI Foundation & the pharma company Mereo BioPharma. Together we’re delighted to announce that English version of The IMPACT Survey is now live and will be running until 10th September 2021. Next week we will also launch the survey…

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ERN Exchange Programmes

We have important information for professionals working with rare bone conditions who belong to a healthcare provider in the European Reference Network for Rare Bone Diseases (ERN BOND). Get involved in the new Exchange Programme! And check out the ERN Research Mobility Fellowships! ERN Exchange Programme The European Commission funded the ERN Exchange Programme 2020-2022…

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OIFE at Rare Disease Week

Rare Disease Week (RDW) is a brand new week-long series of events organized by EURORDIS which started February 22nd 2021. It included many webinars that targeted on rare disease patient advocates. The goal was to empower them with knowledge and skills so they can effectively participate in advocative activities at a European level and influence…

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Rare 2030 Recommendations

On February 23rd we were at least six people from the OIFE-community represented at the big Rare 2030 conference brilliantly hosted by EURORDIS. The conference had more than 650 participants attending live (online) and even more people following on streaming. The main purpose was to present the recommendations from the Rare2030 foresight study. These were…

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OIFE Youth at Rare Disease Week

Did you know that the first Brussels Rare Disease Week starts tomorrow? #RareDiseaseWeek brings together Members of the European Parliament (MEPs) and rare disease patient advocates from across Europe to exchange ideas and ensure fairer and more inclusive policies for people with #rarediseases. OIFE has three young people representing their countries at Rare Disease Week…

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First OIFE Leadership Meeting

The European member organizations of OIFE virtually came together on February 1st to learn about what’s happening in pharmacological research and how the patient organizations in Europe can work nationally and on a European level to improve access to new and potential treatments for OI. In addition to the delegates, leaders from the European OI-organizations…

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Guide for parents after diagnosis

Your newborn child is finally here, but when you discover that all is not as it should be, what do you do? – When your child is diagnosed with a rare condition, there are so many things that go through your head. OIFE recommends the publication “Guide for parents after diagnosis”  to parents after they…

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Colorful graphic of six people with rare diseases and logos of OIFE and EURORDISADVOCACY

One month to Rare Disease Day!

Today marks the launch of the OIFE awareness campaign connected to Rare Disease Day which takes place on the last day of February each year. What is Rare Disease Day? The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on people’s…

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RARE2030 – Survey to shape future policy

We need your help! OIFE and EURORDIS need your opinion on future policy for people with OI and other rare diseases! If enough people with OI worldwide provide an answer to this survey, it will help us shape the future of rare disease policies regarding access to health care, medical and social research and diagnosis…

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