CONFERENCES

Rare Bone Disease Workshop

The Bone Research Society (BRS) is one of the largest national scientific societies in Europe dedicated to clinical and basic research into mineralised tissues, and is the oldest such society in the world. Meetings are held annually, attracting a wide audience from throughout the UK and beyond. The presentations are traditionally balanced between clinical and laboratory studies. The participation of young scientists and clinicians is actively encouraged.

BRS2020 has moved online from July 6th – 8th and will focus on oral communications, posters, the Industry satellite symposia and the Rare Bone Disease Workshop.

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ADVOCACY

Data strategy for the ERNs

EuRR-Bone is launched!

The registry EuRR-Bone was launched this week, and 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.

OIFE attended EURORDIS webinar on data strategy for the ERNs

Having more knowledge on registries and data sharing is therefore very important for the OIFE these days. Today we were represented at a webinar called “A data strategy for the European Reference Networks” (ERNs), which included the following talks:

  • EURORDIS proposals to develop a data strategy for ERNs
  • The European Health Data Space
  • ERNs data needs, progress until today and challenges around registries, data collection and data sharing across ERNs.
  • The perspective of ERNs hospital managers on data needs, opportunities and challenges.

EURORDIS publication on data strategy

The webinar was connected to a new publication from EURORDIS called “No time to lose: Building a data strategy for the European Reference Networks“. The aim of the publication is to inform the debate on a data strategy for the ERNs. The paper outlines EURORDIS’ proposal to co-create a comprehensive ERN data strategy that matches the ambition of the Networks, enabling them to address some of the most pressing public health needs of people living with a rare disease or complex condition.

The ERNs represent a unique opportunity for the innovative use of health data across borders to improve the lives of people living with a rare disease. At the same time, the large majority of people living with a rare disease are willing to share their health data to advance care and research, as long as this is done in a secure manner and they remain in control of the data sharing process. An integral data strategy should therefore be one of the building blocks of an ERN structure that aims to improve the life of people living with a rare disease through knowledge and data sharing across countries and diseases.

See also this useful glossary to understand more about data sharing and patient data.

 

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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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EDUCATIONAL

ECHO – Rare Bone Virtual Clinic Series

Physicians of all specialties, nurse practitioners, physician assistants, and other healthcare professionals with an interest in rare bone conditions are welcome to attend monthly case-based telementoring presentations and discussions. The webinars are primarily for professionals in the US, but professionals from other countries can also ask to join.

Presented by OIFE’s partners the Osteogenesis Imperfecta Foundation (OIF) in partnership with the Rare Bone Disease Alliance (USA), the series will focus on general and disease specific topics related to rare bone diseases.

The first session will be about genetic testing in the diagnosis of rare bone diseases and the second session will cover dominant OI vs recessive OI and the impact on treatment.

Virtual clinic sessions will begin in August 2019, and occur the first Thursday of each month, from 3:00 PM to 4:00 PM ET (21.00 – 22.00 Central European Time).

Click here for more information, the full schedule and to sign up.

 

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EVENTS

See, Hear, Smile!

2 Weeks left until Early Bird Deadline!

Are you a professional who’s interested in eyes, ears and teeth of people with OI? Or basilar invagination (BI)? Do you yourself have issues related to this? Then we invite you to take part in our seminar See, Hear, Smile! from June 14th – 15th in Riga, Latvia. Everyone interested in the topics is welcome to attend.

Target group:
– Dentists, orthodontists and other professionals working with teeth & jaws
– Clinicians & researchers with an interest in eyes, ears or basilar invagination (BI) in OI
– Clinicians & researchers with an interest in OI in general
– OI-community (people with OI, family members, staff and volunteers)
– Professionals & people connected to other rare bone diseases

More information can be found here:
https://oife.org/seehearsmile/

Please help us spread information about the event to professionals you know who are working with the relevant topics, or others you think might be interested!

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