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Dear friend,

 

ERN BOND meeting in 2022

The BOND final meeting will be on 8-9 February 2022 in Bologna. 

All BOND experts from full members or affiliated partners are invited to participate. 

This year, the EuRR-Bone annual meeting will align with ERN BOND’s meeting and will be a hybrid meeting, both in person and online. 

This joint meeting will be an opportunity to discuss together about the ERN BOND activities completed and to be implemented in the future.
 
More details will follow on the website.
 

EJP RD Joint Transnational Call 2022


The Joint Transnational Call 2022 opens: a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.
 
The call will open on December 14th
 
Timetable, contacts, and more information here: www.ejprarediseases.org/joint-transnational-call-2022
 
EJP RD – Networking Support Scheme (NSS) Funding Opportunity
The NSS call encourages knowledge-sharing between health care professionals, researchers and patient advocacy in the field of rare diseases and rare cancers from countries involved in EJP RD.

The NSS has been now expanded to include online and hybrid networking events that consists of a group of participants networking face-to-face and  online.

There is no limit on the number of participants per event; however, the maximum budget that can be requested is € 30,000 per networking event.

The Call for the NSS is open on a continuous basis.

Next collection date: December 2nd, 2021 at 14:00 (CET)

 
More information
Share4Rare Call4Projects 2022 for patient-centred research initiatives
The Share4Rare platform enables to gather data from patient and caregivers on disease related questions and other areas of scientific interest: burden and impact of the disease, its natural history, how the disease affects quality of life, etc. 
 
The objective of this call is to select two projects from research groups and/or patient organizations to be implemented and developed in 2022.
 
Selected proposals will be co-financed by Sant Joan de Déu Research Foundation, which will assume 50% of the costs related to the implementation of the research project.
 
The 2nd Share4Rare Call for Research Projects will be open until December 10th 2021.

 
More information
EURORDIS Photo Award
 
The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond.
 
The contest is open to all nationalities, ages, and diseases. Every year, hundreds of people from all around the world submit their photos, each reflecting the drive of people living with a rare disease.
 
Submissions for the 2022 Photo Award will be open until January 16th 2022.
 
More information and submit your photo here: www.blackpearl.eurordis.org/photo-award
Update from EuRR-Bone (The European Registry for Rare Bone and Mineral Conditions)
Bone and mineral conditions case counter (since April 2020)
  • Bone dysplasia conditions: 344 cases
  • Mineral conditions: 384 cases

Adverse events registration in e-rec
 
In the e-rec reporting set up you will find a new option: adverse events.
 
For now there will be an option for denosumab related adverse events in children and adults regarding rebound, fractures, hypercalcemia for any disease. At this moment we are working together with the Dmab in OI study group to develop the fields to collect in the Core registry but in this way we can prospectively start registering patients (not only children and not only OI) with side effects of withdrawal.

For other groups who want to collect data on side effects, this option is of course open for more of you so when interested drop us a note on eurr-bone@lumc.nl and, of course we urge everybody to set this reporting option on 'active'.



Patient and Clinician Survey

The EuRR-Bone and EuRRECa registries are surveying patients and clinicians to better understand the needs of the bone and endocrine community regarding Patient Reported Outcome Measures (PROMs). PROMs are used in clinical practice to obtain reports from patients about their health and well-being.  
 
The results of this survey will help the registries decide which PROMs to add to the registries clinician and patient platform.
 
As we are approaching the launch of the first diseases specific module we are currently organizing specific drop in sessions for the core registry and the disease specific modules. 
 
Go to the website for the next meeting or drop an email on
eurr-bone@lumc.nl to find out or make a private appointment.

Publications


Patients' priorities and expectations on an EU registry for rare bone and mineral conditions. 

Understanding the natural history of rare bone and mineral conditions is essential for improving clinical practice and the development of new diagnostics and therapeutics.
 
To understand the user needs, ERN BOND and ePAGs developed and implemented a multinational survey about the patient's preferred database content and functionality through an iterative consensus process.
 
The publication is the result of the activities of BOND WG5 Database: Natural History of Diseases. Outcomes described in the paper gave a substantial contribution to the drafting of the EURR-Bone proposal and will be eventually used to design a registry on rare bone diseases in the coming years.

 
Read the full article

Rare Skeletal Diseases Column on "Tabloid di Ortopedia".
 
Tabloid di Ortopedia is a monthly periodic magazine addressed to Italian orthopedists, rheumatologists and physiatrists. Articles are in Italian only.
 
From September 2021 the magazine hosts a column on rare skeletal diseases edited by ERN BOND experts.
 
Read the lead-in by Dr. Luca Sangiorgi and Dr. Maria Gnoli, Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli – Bologna. www.orthoacademy.it/malattie-rare-ruolo-sentinella-ortopedico-territorio
 
Read: “Fibrous dysplasia of bone”, by Prof. Sandro Giannini and Dr. Gaetano Paride Arcidiacono, Department of Medicine-DIMED, University of Padova. www.orthoacademy.it/malattie-rare-focus-displasia-fibrosa-osso

December topic: “Albright osteodystrophy and ectopic ossification”, by Prof. Giovanna Mantovani and Dr. Giulia Del Sindaco, Endocrinology Unit, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico of Milano, Department of Clinical Sciences and Community Health, University of Milano.

Webinars
ERN BOND webinars


If you missed ERN BOND past webinars, recordings are available at www.ernbond.eu/webinars

EJP RD TRAINING webinar

The Work package 20 of the EJP-RD project is delivering a series of advanced webinars on innovative trial design methodology addressed to the rare disease community and aimed at stimulating the understanding and use of innovative tools. These webinars will have a lecture on the specific topic followed by an invited panel discussion and an open round.
 
First webinar: Does Randomization matter in RD clinical trials? 
 
Lecture: Prof. Dr. Ralf-Dieter Hilgers, head of Department of Medical Statistic at RWTH Aachen University.
 
Date and time: December 14th, 2021, 4 pm CET
 
Registration deadline: 10th December
 
More information
ECTS Webinar Series: Bone, Muscle & Beyond

ECTS Organises Webinars on practical issues on Bone Muscle & Beyond topics, including basic and clinical research.
 
Upcoming webinar: The development and repair of bone-to-tendon attachment.
 
Lecture: Dr. Elazar Zelzer
 
Date and time: December 6th, 2021, 4 pm CET

 
More information

Upcoming Events


ECTS 2022, 49th edition of the European Calcified Tissues Society Congress

The congress takes place in the city of Helsinki, Finland, from 7th to 10th May 2022, with a pre-congress day on 6th of May.

Abstract submission is now open until January 11th 2022.
 
More information
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ERN BOND · Istituto Ortopedico Rizzoli · Via di Barbiano, 1/10 · Bologna, BO 40136 · Italy

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