News
All 24 ERNs united to help Ukrainian people with rare diseases
All 24 European Reference Networks (ERNs) launch a dedicated website and social media campaign to collect information to help health professionals to find support for Ukrainian patients with rare diseases: [...]
REMEDI4ALL / drug repurposing and clinical trial readiness
Monday October 2nd 2023 from 13:00 to 14:00 CET Speaker: Anton Ussi (EATRIS ERIC - European Infrastructure for Translational Medicine) Organised by ERICA in collaboration with EJP RD and ERN [...]
Webinar Series Rare Bone Diseases: Ollier Disease
Chairs: Dr Luca Sangiorgi, Istituto Ortopedico Rizzoli, Bologna, Italy & Dr Thomas Funck-Brentano, Université de Paris, Paris, France Speaker: Prof Valérie Cormier-Daire, French Institute of Health and Medical Research, France [...]
EJP RD Variant Prioritization and Enrichment for Rare Diseases Workshop
🗓 From 20th to 22nd September 2023 ⏰ 09:00 - 17:30 📍Istanbul, Turkey Participants will learn the fundamentals of Whole Exome Sequencing (WES) including terminology, pre and post-alignment processing, variant [...]
EURORDIS – European Rare Diseases Organisation Black Pearl Awards
Don't miss your chance to nominate your star of the rare disease community, or enter yourself, for one of the next EURORDIS Black Pearl Awards! The 13 award categories recognise [...]
HOT TOPICS – Pediatric Bone Diseases
HOT TOPICS: Pediatric Bone Diseases. New diagnostic and therapeutic frontiers. 📍Rome, 15-16 September 2023 The deadline for the abstracts submission is August 10th ⤵️ https://adobe.ly/3rySLpj
Take the new #RareBarometer survey!
Survey now live! Take the new #RareBarometer survey and share your opinion on newborn screening for rare diseases! Should rare diseases be screened at birth? Survey available here in 24 [...]
Liana, Tenna, Claudia and Rebecca attended and contributed under the OIFE conference “Balancing life with OI”.
🔹The conference addressed issues around pain in OI, and also other rare bone diseases. Rebecca, Tenna and Liana participated in a panel were we discussed the commonalities and differences in [...]
Transition from childhood to adulthood in rare bone diseases
Tuesday June 20th, 2023 From 16:00 to 17:00 CEST Speaker: Corinna Grasemann Pediatric Endocrinologist, Ruhr-University Bochum Organized by European Calcified Tissue Society and ERN BOND
Webinar Series Rare Bone Diseases: The pathogenesis and consequences of having too much bone
Wednesday May 31st, 2023 From 16:00 to 17:00 CEST Chairs: Natasha Appelman-Dijkstra, Adalbert Raimann Speaker: Prof Wim van Hul, University of Antwerp Organized by European Calcified Tissue Society and ERN [...]
Framework for Patient Engagement in Clinical Trials
Wednesday May 24th 2023 from 15:00 to 16:00 CEST Speakers: Virginie Hivert and María Cavaller Bellaubi, EURORDIS- Rare Diseases Europe Organised by ERICA in collaboration with EJP RD and ERN BOND
Workshop “Patient priorities in ERN BOND beyond Quality of Life”
Workshop "Patient priorities in ERN BOND beyond Quality of Life" organised by ERN BOND ePAGs Venue: Istituto Ortopedico Rizzoli, Via Pupilli 1, Bologna Date: 6th May 2023, 9am-4pm (CEST) This [...]
ERN BOND plenary hybrid meeting
4th - 5th May 2023 Bologna at Centro di Ricerca Codivilla-Putti, Istituto Ortopedico Rizzoli, Via di Barbiano 1/10. Complete by 30th April 2023 the registration form for online participation
The 2nd ANDO Congress: “Discovering Knowledge and Experiences”
⏰ 29th and 30th of April 📍 Setúbal, Lisbon A lot of news and diversity, including themes such as Adapted Athletics, Nutrition, Accessible Tourism, among many others and national and [...]
XIII Conference A.C.A.R. Aps: Working towards a multidisciplinary and shared approach of rare disease patients transition from paediatric to adult care management
A.C.A.R. Aps (Italian Patient Association for Multiple Osteochondromas, Ollier disease and Maffucci syndrome) will hold their XIII Conference from 14th to 16th April 2023 at the Grand Hotel Continental, Tirrenia [...]
EJP RD – ERN Workshop: Genetics and Precision Medicine in Rare Diseases
Precision medicine is an emerging approach to clinical research and patient care based on patient-individual medical data, genetic, clinical phenotype and sociodemographic characteristics to provide patient-level predictions of disease course [...]
Designing and conducting clinical trials in rare diseases – what industries expect for partnering with clinical sites
Friday April 14th 2023 from 12:30 to 13:30 CEST Speaker: Diego Ardigò, Chiesi Group Organised by ERICA in collaboration with EJP RD and ERN BOND
Bone Curriculum Symposium and the PreSymposium on Rare Bone Diseases, endorsed by ERN BOND
The Bone Curriculum Symposium and the PreSymposium on Rare Bone Diseases organised by the KBVR / SRBR Osteoporosis and Fracture Prevention Group will be held on 16th – 17th March [...]
Definition of orphan drug by the EMA
Tuesday March 28th 2023 from 12:30 to 13:30 CET Speaker: Armando Magrelli, Istituto Superiore di Sanità (ISS) Roma, Italy Organised by ERICA in collaboration with EJP RD and ERN BOND [...]
Melorheostosis – Webinar series in rare bone disease
1st part: Tuesday February 7th 2023 from 16:00 to 17:00 CET 2nd part: Tuesday March 14th 2023 from 16:00 to 17:00 CET Hosts: Natasha Appelman-Dijkstre, Natalie Butterfield Speaker: Geert Mortier [...]
#wiedu by LOUDRARE
LOUDRARE is a recently founded non-profit organization that has our ePAG Nadine Großmann among the founders. The goal of LOUDRARE is to build a digital community for people with rare [...]
Essential requirement before thinking about a clinical trial
Tuesday February 28th 2023 from 12:00 to 13:00 CET Speakers: Viviana Giannuzzi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
RARE DISEASE DAY 2023 – Bologna
On the occasion of Rare Disease Day 2023, the Territorial Conference Socio Sanitaria Metropolitana in agreement with the Municipality of Bologna, proposes a conference in which, the representatives of the Institutions components [...]
#UNIAMOLEFORZE – RARE DISEASE DAY CITTA’ DI GENOVA
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. [...]
EURORDIS All ePAG Meeting
The EURORDIS All ePAG Meeting will take place between November 14th-17th, 2022. This will be an online event of 5 short sessions over 4 days. They will take place from [...]
Innovation Bootcamp in Rare Diseases 2022 (IBRD2022) Congress
The in-person event will take place in Brussels, Belgium on October 11th. The congress is targeted towards all professionals involved in the prevention, treatment and diagnosis of rare diseases and [...]
Integration of the ERN into the local healthcare system in Bologna
Integration of the ERN into the local healthcare system in Bologna: yesterday we had the kickoff meeting at the ERN BOND coordinating centre. The Metropolitan Territorial Social and Health Conference of [...]
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 [...]
2nd ICCBH-ERN BOND International Achondroplasia Workshop Spinal Pathology in Children with Achondroplasia, 2nd July, Dublin, Ireland.
The workshop co-organized by International Conference on Children Bone Health and European reference Network on rare Bone disorders (ERN BOND) was held by Dr Moira S Cheung and Dr Klaus [...]
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 [...]
Spinal Stenosis in Achondroplasia Survey
In the past weeks, representatives of patient organizations, the European Reference Network for Rare Bone Diseases (ERN BOND) and the European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) have [...]
Achondroplasia Spinal Survey
The Spinal Working Group of ICCBH Achondroplasia designed an investigation with the aim of better understanding the pathophysiology and management of spinal pathology in achondroplasia. The results will be presented [...]
ERICA 2nd General Assembly 20th-22nd June 2022 in Bologna, Italy
All the ERICA beneficiaries, ERN representatives, Expert Group members, Advisors and partners will gather to face-to-face symposium to discuss the progress and future of the ERN related research activities and [...]
ERN Bond Survey on training needs
This survey aims to identify the training needs of ERN Bond members regarding our core services such as the ERN Collaborative Platform (ECP) and Clinical Patient Management System (CPMS). It [...]
EJP RD Research Mobility Fellowships call
The call for Research Mobility Fellowships aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence. [...]
All 24 ERNs united to help Ukrainian people with rare diseases
All 24 European Reference Networks (ERNs) launch a dedicated website and social media campaign to collect information to help health professionals to find support for Ukrainian patients with rare diseases: [...]
ERN BOND Webinar: Human Body Movement & Scan Analyses
ERN BOND webinars are aimed at prompting education and training on rare bone diseases and addressed to healthcare professionals, patients and patients groups in order to increase knowledge on rare [...]
ERN BOND became Associate Partner of ECRD 2022
The ECRD is the largest multi-stakeholder gathering in Europe for the rare disease community. The biennial Conference is an opportunity to network and exchange knowledge with patient advocates, policy makers, [...]
Rare Disease Day activities
Rebecca Tvedt Skarberg, ERN BOND ePAG, is chair of Rare Disease Day conference in Norway. This years event will be held digital (in Norwegian). The Norwegian Minister of Health will [...]
Una presa in carico più equa ed olistica per la persona con malattia rara
#RAREDISEASEDAY - 25.02.2022 In occasione della Giornata delle Malattie Rare, ERN BOND, la rete di riferimento europea... Pubblicato da ERN BOND - European Reference Network on Rare Bone Diseases su Venerdì [...]
European Reference Network on Rare Bone Diseases 5th Anniversary online conference
The ERN BOND conference celebrating the 5-year network anniversary will be online from 8th to 9th February 2022. Please register to reserve your seat! This year EuRR-Bone annual meeting and ERN BOND [...]
ERN BOND Rare Bone Diseases Diagnosis Questionnaire
We want to inform you about the survey developed by WG1 Diagnostic Challenges of ERN BOND to obtain comprehensive characterization of rare bone disease diagnosis across Europe. It is available [...]
ERN Webinar: Tuesday September 28th 2021
Save the date for the next webinar organised by ERN BOND: Tuesday September 28th 2021 at 17:00 CEST "Talking about the type 2 collagen disorders"
ERN Webinar: Tuesday September 7th 2021
Save the date for the next webinar organised by ERN BOND: Tuesday September 7th 2021 at 16:30 CEST "FD/MAS a joined venture"
EURORDIS annual Black Pearl Awards
Don't miss your chance to nominate your star of the rare disease community, or enter yourself, for one of the EURORDIS Black Pearl Awards 2022. The 12 award categories recognise the [...]
Save the date for the next webinar organised by ERN BOND
Save the date for the next webinar organised by ERN BOND: Monday June 28th at 17:00 – 18:00 CEST "EuRR-Bone: what and how?"
New webinar organised by ERN BOND
ERN BOND organises a series of webinars: the first one will be on Tuesday June 22nd at 11:00 – 12:00 CEST. Gender issues in COVID-19 pandemia Speaker: Prof. Maria Luisa [...]
Save the date for the next webinars organised by ERN BOND
Save the date for the next webinars organised by ERN BOND. Updates and participation links will be published on the ERN BOND website.
Advances in diagnostic and therapeutic methods for lymph flow abnormalities
Intranodal MR lymphangiography is an imaging technique that allows for the central lymphatic vessels to be visualized. Lymph flow problems exist in many rare diseases, particularly in central conducting lymphatic anomaly and generalized lymphatic anomaly and its associated syndromes, such as Noonan.
ERICA – European Rare Disease Research Coordination and Support Action
On Thursday 27th May 2021 (from 10.00 – 16.45 h) & Friday 28th May 2021 (from 10.00 – 15.45 h) the kick-off meeting & 1st General Assembly of the European Rare Disease Research Coordination and Support Action ERICA will be held.
Public consultation “Medicines for children & rare diseases – updated rules” – Have your say!
The initiative on “Medicines for children & rare diseases – updated rules” has been updated on the European Commission’s ‘Have your say’ portal, and a public consultation is open. This initiative explores [...]
ECTS 2021: annual meeting of the European Calcified Tissue Society
ECTS 2021, the 48th annual meeting of the European Calcified Tissue Society, will be held as a virtual meeting. ECTS serves as a forum for researchers and clinicians working in the musculoskeletal field to discover and discuss the latest advances and controversies in research and in the daily care of patients.
EJP RD call for Research Mobility Fellowships will open on 15th of March
The Research Mobility Fellowships aims to support PhD students, Postdocs and medical doctors in training to undertake scientific visits fostering specialist research training, on rare diseases, outside their countries of residence.
Exchange Programme launch for healthcare professionals in ERNS
Up to 44 one-week visit packages will be available to healthcare professionals from ERN BOND member or Affiliated Partner centres over the coming two years.
Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic
ERN BOND coordination team and Italian rare bone diseases experts created the “COVID-19 Helpline for Rare Bone Diseases”, in collaboration with Italian Patient Associations. The helpline aimed at providing high-quality information and expertise on rare bone diseases remotely to patients and healthcare professionals.
First orphan drug for achondroplasia is validated
BioMarin Pharmaceutical Inc. recently announced that the European Medicines Agency (EMA) validated the Company's Marketing Authorization Application (MAA) for Vosoritide, an investigational, once daily injection analog of C-type Natriuretic Peptide [...]
Summer School: Rare Disease Registries and Data FAIRification
This International Summer School is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP-RD). The Course is made up of 5 [...]
ECRD2020 will take place online on 14-15 May
The Conference is a great opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community
EJP-RD: ERN specific Calls for Fellowships and Workshop
In the frame of the EJP-RD project, there are two calls for funding opened on 3 February dedicated only to persons affiliated to either ERN Full Members or Affiliated Partners.
2020 Symposium of the KBVR/SRBR Osteoporosis and Fracture Prevention Group
The KBVR / SRBR Osteoporosis and Fracture Prevention Group is pleased to announce you that the Bone Curriculum Symposium and the PreSymposium Course on Rare Bone Diseases will take place on 12-13 March 2020 in Ghent (Belgium).
Welcome EuRR-Bone!
The European Commission accepted our proposal on the call for projects aiming to support the development and creation of registries for rare diseases in Europe. We can now start to create EuRR-Bone – European [...]
Postgraduate Course in Paediatric Bone and Mineral Metabolism
5 - 6th March 2020, Birmingham. Birmingham Children’s Hospital, a member of the ERN BOND, in collaboration with other ERN BOND expertise centres in the UK, is pleased to announce [...]
2019 call for membership to join ERNs
The call for healthcare providers to join the 24 existing European Reference Networks just closed. A total of 841 applications for ERN membership were received. We are happy to announce [...]
ERN BOND Natural History Database Questionnaire
ERN BOND has been launched one questionnaire addressed to healthcare professionals & patient groups and one dedicated to patients. Thank you so much to everyone who participated!
Presentation of the report MonitoRare of UNIAMO
BOND ERN at the presentation of the report MONITORARE of UNIAMO in Rome, the 3rd of July.
1st ICCBH-BOND ERN International Achondroplasia Workshop: Foramen magnum stenosis in children with achondroplasia
The International Workshop Foramen magnum stenosis in children with achondroplasia, organized by BOND and ICCBH, is a pre-meeting workshop taking place at ICCBH on Saturday 22 June 2019, 07:30-11:50, at Salzburg Congress Centre.
Quality of Life 4 OI, the conference on quality of life with Osteogenesis Imperfecta
Join the conference Quality of Life 4 OI, taking place from 22-25 November 2019 in Amsterdam!
The 3rd ANDO National Meeting in Coimbra, Portugal
We are sharing with you today that the 3rd ANDO National Meeting will take place on the 29th June in Coimbra, Portugal!
The First European Achondroplasia Annual Meeting in Norwich
Save the date for the First European Achondroplasia Annual Meeting at The Assembly House, Norwich, on Thursday 23rd May!
The Norwegian OI organization is celebrating 40 years!
This weekend (11th-12th May) the Norsk Forening for Osteogenesis Imperfekta (the Norwegian OI Organization) is celebrating 40 years!
ACAR Onlus 11th meeting in Tirrenia, Pisa
ACAR Onlus (Associazione Conto alla Rovescia) is an Italian association which has the goal to spread the knowledge and research about Ollier/ Maffucci Syndrome.
Fibrous Dysplasia and McCune-Albright Syndrome: 4th Meeting of International FD/MAS Consortium
SAVE THE DATE! May 28th and 29th, 2019, Florence, Italy. Fibrous Dysplasia and McCune-Albright Syndrome: 4 th Meeting of International FD/MAS Consortium
The 9th International Conference on Children’s Bone Health
The 9th International Conference on Children’s Bone Health will take place in Salzburg, Austria, from the 22nd to the 25th of June 2019. Below, some useful information about it.
The first international conference on Quality of Life for Osteogenesis Imperfecta
“Quality of Life 4 OI”, which is going to take place at Amsterdam RAI Exhibition and Convention Centre from the 22nd to the 25th of November 2019, is the first international conference on the theme of quality of life for people with OI.
2019 ‘Bone Curriculum’ Symposium
Friday 15 March 2019 Pre-Symposium Course on Rare Bone Diseases, Friday 15 and Saturday 16 March 2019 Bone Curriculum Symposium. Organised by the KBVR/SRBR Osteoporosis and Fracture Prevention Group
4th Conference on European Reference Networks
Health professionals, researchers, patient organisations and policymakers gathered in Brussels on 21 & 22 November for the 4th European Reference Networks Conference.