Enlargement of
ERN BOND community

Scientific Advisory Board constitution

The ERN BOND Scientific Advisory Board has been officially elected and includes 5 experts in different areas: Valentina Bottarelli, Brendan Lee, Michaela Mayrhofer, Ana Rath and Matthew Warman.

Welcome to all the new members!

Learn more on the ERN BOND SAB

Inclusion of Affiliated Partners

On August 31^st the inclusion of Affiliated Partners to ERNs community has been finalized: 16 centres from 10 countries are now part of ERN BOND.

Their expertise will support all the network’s activities and will facilitate the sharing of knowledge across the EU. Affiliated Partners should be ERN’s entry points as they improve the accessibility across the EU for patients living in their country.

Click here to discover BOND Affiliated Partners

First Orphan drug for achondroplasia approved

On August 13^th the European Medicines Agency (EMA) validated the Marketing Authorization Application (MAA) for Vosoritide, an investigational, once daily injection analog of C-type Natriuretic Peptide (CNP) for children with achondroplasia.

Melita Irving, Clinical Geneticist at Guy’s and St Thomas’NHS Foundation Trust - one of ERN BOND excellence centre - asserts: “The extensive research conducted in the Phase 2 and 3 clinical trials, along with a natural history study, has provided more scientific and medical knowledge around skeletal dysplasia, especially achondroplasia, than we've ever had before".

Read the press release

Publications

Providing high-quality care remotely to patients with rare bone diseases during COVID-19

“COVID-19 Helpline for Rare Bone Diseases”, a manuscript written by ERN BOND experts in collaboration with two italian Patient Associations, has been accepted for publication on Orphanet Journal of Rare Diseases.

The script illustrates the successful helpline experience, launched in Italy, meant to provide high-quality information and expertise on rare bone diseases remotely to patients and healthcare professionals.

Highlighted topics: general recommendations, pulmonary complications, drug treatment, trauma, pregnancy, children and elderly people, and patient associations role.

Read the full article

Achondroplasia Foramen Magnum Score: screening infants for stenosis

The script, drafted by BOND experts, has been published on Archives of Disease in Childhood. The study included aims to describe the incidence and severity of foramen magnum stenosis in an unselected, sequential series of infants, using a novel MRI score and retrospectively correlate severity with clinical examination and cardiorespiratory sleep studies.

Read the full article

EuRR-Bone Implementation

The electronic reporting of new patients with a rare bone or mineral condition is now available in EuRR-Bone, the European Registry for Rare Bone and Mineral Condition, diseases covered both by Endo-ERN and ERN BOND.

It is now also possible to register COVID-19 infections.

Learn more on the E-REC system

Upcoming Events

European Calcified Tissue Society Congress

Due to the current situation, ECTS 2020 goes virtual and becomes ECTS 2020 digital congress. Enjoy 3-days of cutting-edge and lively exchanges at the Live Prime Time from 22^nd to 24^th October 2020.

A new opportunity for scientific interactions is the ECTS@Home: a series of educational sessions running every week from September to December 2020. ERN BOND organises the session on October 20^th dedicated to Rare Bone Diseases.

Check here the ECTS@HOME – Preliminary Programme

International Summer School on Rare Disease Registries and FAIRification of Data

This training course - an initiative part of a series of training courses included in the framework of the European Joint Programme on Rare Diseases (EJP RD) - will occur online from September 28^thto October 2^nd 2020.

More information about the course

4^th ANDO National Meeting

The meeting, organized by ANDO (Portuguese Association of Bone Dysplasias) will take place on 12^thand 13^thSeptember 2020, in Évora.

The conference will be a good opportunity to listen and discuss themes related to bone dysplasias, in large and open environments.

Full programme and meeting information available here

Next BOND mid-term meeting

The next mid-term meeting will take place online on November 10^th. BOND members and Affiliated Partners are welcome.

Follow us on our social media to stay updated! ⬇️

Enlargement of ERN BOND community

First Orphan drug for achondroplasia approved

Publications

EuRR-Bone Implementation

Upcoming Events

Enlargement of
ERN BOND community