ADVOCACY

LAUNCH OF EURR-BONE

Today was the official launch & kickoff of the the European Registry for Rare Bone and Mineral Conditions (EuRR-Bone), which is funded by the European Union’s Health Programme. OIFE was represented by Rebecca Tvedt Skarberg (ERN BOND ePAG).

EuRR-Bone’s aim is to create a high-quality, patient-centered registry for rare bone and mineral conditions including OI in collaboration with the EuRRECa project (European Registries for Rare Endocrine Conditions).

EuRR-Bone will cover rare bone and mineral conditions the European Reference Network on Rare Endocrine Conditions (Endo-ERN) as well as the European Reference Network on Rare Bone Disorders (ERN BOND). EuRR-Bone will be of service to all patients, health care professionals and researchers involved in the care of people with rare bone and mineral conditions.

EuRR-Bone will be one of the main topics on the agenda on the 2nd meeting of OIFE’s Medical Advisory Board (MAB) on June 19th.

Read more about EuRR-Bone here:
https://eurr-bone.com/

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RESEARCH

Rare Disease Research Challenge

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions (including all 24 ERNs) from 35 countries. On March 3rd Dace Liepina and Ingunn Westeheim was supposed to represent OIFE at a networking event in Paris related to the Rare Diseases Research (RDR) Challenges Call.

We were particularly interested in challenge nr. 3 “Characterize Rare Bone Disorders (RBD) Mobility Challenges in Real World Setting” sponsored by the company IPSEN. The aim of the challenge is to develop full-body automated mobility assessment tool(s) to assess real-life mobility challenges in people living with rare bone disorders, to be compared vs available disease specific patient- and Health Care Professionals (HCP)-reported mobility assessments. You can read more about the challenge here.

Because of concerns connected to COVID-19, Dace & Ingunn decided to cancel their trip, but we have followed up with meetings on Zoom and phone conferences with different stakeholders connected to the challenge.

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