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Apply for EURORDIS Summer School!

Have you seen that applications for the 2022 EURORDIS Summer School are open? OIFE have at least five people who attended Summer School before and who graduated as patient experts. Take your patient advocacy to the next level, and learn with EURORDIS – European Rare Diseases Organisation about an exciting range of topics – including…

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ADVOCACY

Tell Ursula about OI!

Tell Ursula von der Leyen, the President of the European Commission, YOUR reason why Europe needs to take action for a better future for people living with a rare disease by 2030. It’s important that people with OI are also represented in this important campaign document, asking for a new European action plan for rare…

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ADVOCACY

Save the European Health NGOs!

Large European health NGOs like EURORDIS – European Rare Diseases Organisation and European Patients’ Forum play a pivotal role in advocating for and communicating the needs of the most vulnerable in society, whilst continually pressing for greater action in health policy at the EU level. OIFE totally support their work to restore the operating grants…

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ADVOCACY

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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ADVOCACY

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

Winners of Black Pearl Award 2021

Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…

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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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ADVOCACY

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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ADVOCACY

Council of Federations meeting

One or two times a year, members of OIFE’s Executive Committee attend the Council of European Rare Disease Federations (CEF) in EURORDIS. On November 26th and 27th Ingunn and Bruno attended the Zoom-meeting, where more than 90 people from all over Europe took part. Topics included Rare Disease Week 2021, ERNs, Access to therapies, EU…

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