OIFE at RBD Summit

On December 6th three representatives from OIFE took part in the first edition of the Rare Bone Disease (RBD) Summit:

  • Oliver Semler
  • Ingunn Westerheim
  • Inger-Margrethe Stavdal Paulsen

On December 14th we will attend the second half of the two half-day multi-stakeholder meeting.

The RBD (Rare Bone Disease) Summit is a global multi-stakeholder group meeting that aims to provide a platform to enable contributors working in the rare bone disease field (patient organizations, experts, pharmaceutical industry, and scientific and medical societies) to collaborate towards improving the lives of people living with these conditions. It is planned to be an annual event.

The Summit is led and funded by Ipsen Pharma, with Kyowa Kirin, Alexion, BioMarin, and Ultragenyx as the supporting strategic partners, in close collaboration with patient organisations, experts, and medical and scientific societies.

This two half-day meeting will gather opinions and experience on the key challenges for
people living with RBD, and highlight:

  • challenges in diagnosis
  • patient and caregiver experience
  • discuss how to optimize care

OIFE’s representatives were spread in all the 3 workshops:

  • Overcoming obstacles to diagnosis: Improving awareness of rare bone diseases
  • Optimizing pathways to care by implementing a person-centered care pathway (PCCP)
  • Narrowing the gap between the patient experience and how it’s understood by HCPs

To learn more about the objectives, agenda and the steering committee of 2021 RBD Summit, please visit

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