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ERN BOND Network Meeting and ePAG meeting, Bologna 26th, 27th, and 28th September 2022

The next Network meeting for representatives of ERN BOND HCPs will be held on 26th September afternoon and 27th September morning, while the ePAG meeting - healthcare professionals are very welcome - will be held on 27th September afternoon and 28th September morning.

Both will be in-person meetings in Bologna (Italy) at the Istituto Ortopedico Rizzoli, the BOND Coordinator HCP. The network will cover travel and accommodation expenses for one representative (or delegate) for each HCP/organization.

Save the dates! Preliminary agenda and registration form, also containing instructions for the bookings, will be shared in the next following weeks.

All 24 ERNs united to help Ukrainian people with rare diseases

Launch of a continuously open survey for ERNs HCPs to report Ukrainian refugees' care.

In the context of the Ukrainian crisis, ERNs need to know how many patients with rare diseases get care outside Ukraine. In order to adapt the coordination, it became important to follow the needs to know if initiatives are adapted to the situation.

Thus, the ERN Coordinators Group launched a continuously open very simple form for each Ukrainian patient ERNs HCP have been managing at this link.

If you are an ERN HCP that currently care for Ukrainian refugees, do not hesitate to complete this survey.

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EJP RD - Rare Diseases Clinical Trials Toolbox

The Rare Diseases Clinical Trials Toolbox has been developed by EJP RD as a practical aid for developers of clinical trials on medicinal products for human use regardless of therapeutic area

The toolbox aims to collect the accumulated knowledge, experience, and resources (collectively termed as ‘tools’) generated by previous projects and/or research infrastructures and other organizations into a practical and guided toolbox to help clinical trialists and R&D managers understand the regulations and requirements for conducting trials, with special focus on investigator-initiated trials for rare diseases and applicable in Europe. 

 
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EJP RD - FAIRopoly board game: FAIRification Guidance for ERN Patient Registries

The board game FAIRopoly developed by EJP RD illustrates the FAIRification steps followed by the ERNs registries to make their data more Findable, Accessible, Interoperable, and Reusable.

The player starts the game on the top left corner of the board and moves around clockwise one tile at a time.

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EJP RD - Funding opportunities

Networking Support Scheme (NSS)

The aim of the NSS call is to encourage knowledge-sharing between health care professionals, researchers and patients on rare diseases and rare cancers, as well as to enable or increase the participation of usually underrepresented countries in Europe in new and existing research networks. Eligible applicants are health care professionals, researchers, and patient advocacy organisations from  countries involved in the EJP RD.

The NSS has been expanded to include online and hybrid networking events that can now be funded in addition to face-to-face events.

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 submission system for the Networking Support Scheme will open on July 1st, 2022.

The next collection date is September 1st, 2022 at 14:00 (CET).

 
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Adult chronic nonbacterial osteomyelitis (CNO) of the sternocostoclavicular region (SCCH) Survey

The Center for Bone Quality of the Leiden University Medical Center (the Netherlands) has developed this survey on chronic nonbacterial osteomyelitis (CNO) of the sternocostoclavicular region (SCCH), isolated or as part of SAPHO syndrome, in adults.

The aim is to collect international perspectives on the diagnosis and treatments of this rare bone disease spectrum.

All CNO/SAPHO experts are invited to complete this survey (21 questions, 5 minutes) by July 1st, 2022.

 
Complete the survey

STOPFOP - Saracatinib trial TO Prevent FOP 

FOP expert center Amsterdam UMC (ERN BOND member) is conducting an EU-IMI STOPFOP clinical trial together with the Royal National Orthopaedic Hospital and the University of Oxford (UK), the Klinikum Garmisch Partenkirchen (Germany), and the University of Boston (USA). The saracatinib, a kinase inhibitor, is investigated in patients aged 18 years and older with fibrodysplasia ossificans progressiva (FOP).

The study is open to all European patients.

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Update from EuRR-Bone (European Registries for Rare Bone and Mineral Conditions)

Bone and mineral conditions case counter (since April 2020) 

  • Bone dysplasia conditions: 429 cases

  • Mineral conditions: 367 cases


New disease specific module

The Fibrous dysplasia/McCune-Albright syndrome module is now open in the Core Registry. Including a clinician and a patient reported outcomes dataset, this module collects relevant longitudinal data.

Drop-in sessions EuRR-Bone

Drop-in sessions are scheduled twice every month:

·         The second Friday in every month at 2pm CET (1pm UK)

·         The fourth Wednesday in every month at 4pm CET (3pm UK)


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.

Update from ERICA

ERICA - European Rare Disease Research Coordination and Support Action consortium in which all 24 ERNs take part, aims to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.

ERICA 2nd General Assembly 

The European Rare Disease Research Coordination and Support Action - ERICA 2nd General Assembly took place in Bologna from June 20th – 22nd, 2022, as a hybrid meeting with more than 100 people attending in person and online.

Hosted by Istituto Ortopedico Rizzoli (IOR) and ERN BOND Coordinator Luca Sangiorgi, this was a great opportunity to discuss the progress and future of the ERNs related Research activities and to participate in the WP-Specific Expert Working Group sessions to exchange the success stories and to brainstorm with the best experts on the field.

All the presentations will be made soon available at ERICA website.

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ERICA Collaborative inter-ERN Research Wall

ERICA aims to promote collaborative inter-ERNs research projects. The Research Wall has been created for centralising the announcement of any new project and search for collaborators. 

It provides basic information about the open calls for collaboration as well as contact details of the project Principal Investigator. If you wish to receive updates directly by email you can register to the Research Wall mailing list  

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Publications

Rare Skeletal Diseases Column on “Tabloid di Ortopedia”
Articles are in Italian only.

Read all the articles

“Genetic and Genomics of Skeletal Disorders” Special Issue on ‘Genes' Journal, including rare skeletal diseases sub-topic.

BOND members are invited in contributing to this Special Issue with a manuscript. A special rate for BOND members is provided by the Journal and ERN BOND will co-finance the publication costs on manuscripts on BOND-related topics (BOND contribution will depend on the number of eligible papers).

If you are willing to submit a manuscript please contact the Guest co-Editors, Dr. Elena Pedrini (elena.pedrini@ior.it) and Dr. Evelise Brizola (evelise.brizola@ior.it), together with the BOND Coordination Team.

Read the Special Issue
Webinars

ERN BOND webinars

Details of upcoming webinars and recordings of past events are available at www.ernbond.eu/webinars/

Please contact the Coordination Team to suggest topics to be addressed in the ERN BOND webinars.

EJPRD training and education

MOOC on Diagnosing Rare Diseases: From the Clinic to Research and Back.

The topics covered include: the diagnostic process and the types of genetic tests available for rare diseases; the differences in rare genetic diseases patient pathways; the technological advances for diagnostic research; the role of collaborative studies and data sharing in rare diseases diagnosis; the impact of having a diagnosis or lacking a diagnosis on patients' lives; the role and place of physiopathology approaches as well as the social sciences research in the context of rare diseases diagnosis.

You can begin learning as soon as you enrol, without waiting for a new ‘run’ to begin. Facilitation will be guaranteed till July 3rd, 2022 by the mentoring team.

Registration is free and open at this link
 

Expression of interest to participate in the second paediatric expert patients training workshop

The workshop, devoted to 15 paediatric patients in Europe, is organised by TEDDY European Network of Excellence for Paediatric Research (www.teddynetwork.net) in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJP RD).

The paediatric training workshop will be held during the iCAN (International Children’s Advisory Network) summit, that will take place on July 12th-15th at the University of Lyon (France).

The deadline for sending your application is July, 1st.

Registration and info

ECTS Webinar Series: Bone, Muscle & Beyond

ECTS organises Webinars on practical issues on Bone Muscle & Beyond topics, including basic and clinical research.

Registration and info
Upcoming Events

ECRD - European Conference on Rare Diseases 2022

ERN BOND is an Associate Partner of ECRD 2022: MISSION (IM)POSSIBLE: Putting rare disease policy into action, organized by EURORDIS and Orphanet.

The European Conference on Rare Diseases 2022 will take place fully online and is spread over 5 half days, from 27th June to 1st July 2022.

Programme at a glance: https://www.rare-diseases.eu/programme/

 
Register

3rd International XLH Symposium in Dublin

The 3rd International XLH Symposium is hosted by the International XLH Alliance on July 1st 2022 in Dublin, Ireland and organised in association with the 10th International Conference on Children's Bone Health (ICCBH).

This Symposium will bring together scientists and clinicians from a wide range of disciplines to gain a better understanding of X-linked hypophosphataemia and offer the latest in research and treatment management with sessions by world-leading experts.

 
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ICCBH 10th International Conference on Children's Bone Health

The ICCBH 10th will take place in Dublin from 2nd to 5th  July 2022.

The Conference will bring together scientists and clinicians from a wide range of disciplines and from across the globe to gain a better understanding of the growing skeleton in health and disease.

Pre-meeting workshop co-organised by ERN BOND “2nd ICCBH-ERN BOND Workshop: Spinal Pathology Children with Achondroplasia” on 2nd July at 08:00-11:45 CEST. See the pre-meeting programme.

 
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OI2022 - 14th International Conference on Osteogenesis Imperfecta

The OI2022, will take place in Sheffield from 30th August to  2nd September 2022.

The Conference will bring together scientists and clinicians from a wide range of disciplines, presenting cutting edge news from basic science, current research as well as medical and surgical treatment of OI. 

Pre-meeting workshop co-organised by ERN BOND: “Early life interventions and assessments” on 30th August 2022 at 10am CEST.

 
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1st virtual OIFE Investigator meeting

Osteogenesis Imperfecta Federation Europe (OIFE) is organizing it's first Investigator Meeting.

This virtual one day meeting will take place on Zoom on November 18th 2022 from 2pm at 7pm CET (8am- 1pm EST).

The target group is primarily researchers and clinicians working with OI, but anyone interested in OI-research can join.

More information
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ERN BOND · Istituto Ortopedico Rizzoli · Via di Barbiano, 1/10 · Bologna, BO 40136 · Italy

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