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

CEF-meeting in Brussels

On November 8th Céu Barreiros (treasurer) represented OIFE at the Council of Federations-meeting in Brussels hosted by EURORDIS. The Council of European Rare Disease Federations (CEF) provides a platform for the exchange of experiences and information across federations working for different diseases or group of diseases. The council also allow federations to work together on…

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CONFERENCES

OIFE in Barcelona

Today OIFE is represented by vice-president Dace Liepina at the 28th EURORDIS Round Table of Companies Workshop in Barcelona – “A New PARADIGM of Meaningful Patient Engagement in the Life Cycle of Medicines”. The event is an annual seminar for representatives from industry (pharma) and from EURORDIS and their member organizations. This year, the workshop…

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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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EDUCATIONAL

The EURORDIS Open Academy

OIFE is a member of the rare disease umbrella organization EURORDIS. At least four of OIFE’s patient representatives have graduated from EURORDIS Summer School, but we are always interested in recruiting more patient experts. Through the Open Academy capacity-building programmes, EURORDIS empowers patient advocates to have the confidence and knowledge needed to bring their expertise…

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CONFERENCES

Networking in Brussels

OIFE had several representatives in Brussels attending the 3rd EURORDIS Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies (https://www.eurordis.org/3rd-access-symposium) in February 2019. During the conference there were also opportunities to network. Here with representatives from Open App, Bindeweefsel.Be and Mereo. What was interesting to know? Our Honorary Member Taco van Welzenis gives an…

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EDITORIALS

The Voice of People with OI

February’s OIFE Magazine main topic is research and I could have called this editorial “The patients’ voice”. But to be honest, I’m not too fond of the term patients. Patients belong in hospitals. The OIFE represents people with OI and families, who most of the time live active and meaningful lives outside hospital walls. There…

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