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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EDITORIALS

Enough is Enough! Speech from Rare2030

This text was originally given as a keynote speech by Rebecca Tvedt Skarberg at the Rare2030 conference in February 2020. It was later published as the editorial in OIFE-Magazine 1-2020.  “It has been a great honour to be a part of Rare2030. Building tomorrow’s roadmap for rare diseases is a project close to my heart, simply…

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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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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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Logo ERCD conferenceADVOCACY

OIFE at ECRD-conference

The European Conference on Rare Diseases (ECRD) was originally planned to take place in Stockholm in May. Because of the Corona virus, the conference was moved online to May 14th and 15th, which made it possible for more people from OIFE to attend. Five people represented OIFE specifically and you can read about their experiences…

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ADVOCACY

OIFE at ECRD

On May 14th and 15th OIFE was well represented at the online European Conference on Rare Diseases (ECRD) with 5 representatives, including OIFE president and OIFE Youth Coordinator. In addition 3 people from the OIFE-community attended the event on behalf of other stakeholders. The ERCD conference was originally planned to take place in Stockholm. 1,500…

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ADVOCACY

Rare2030

The Rare2030 Panel of Experts (nearly 200 key opinion leaders in rare disease policy) met in person for the first time in Brussels on November 7th to discuss trends in rare disease diagnostics, treatment, care and social support and how they may lead to future policy scenarios. Rebecca Tvedt Skarberg (ePAG in ERN BOND suggested…

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ADVOCACY

Rare2030 & OIFE at EURORDIS events 2019

Holistic and Integrated Care by 2030: EURORDIS Membership Meeting 2019 in Bucharest By Dana Andrei, OIFE Delegate Romania & Rebecca Tvedt Skarberg, OIFE delegate Norway and ERN BOND ePAG Black Pearl Events The Black Pearl Events took place on the 12th of February and Rebecca Tvedt Skarberg and her husband Knut Erik were invited to…

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