Dear friend,


ERN BOND 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 meeting will have a joint meeting giving the opportunity to discuss together about the common activities already completed and to be implemented in the future.

Programme at glance

Tuesday, February 8th 2022 (Times in CET)

9:00-10:30 EuRR-Bone annual meeting

11:00-12:00 EuRR-Bone governing board meeting (reserved to the Board members)

14:00-15:30 ERN BOND conference: network overview and achievements, diagnostic process, classification of rare bone disorders, guidelines, EuRR-Bone overview)


Wednesday, February 9th 2022 (Times in CET)

10:00-12:00 ERN BOND conference: monitoring exercise, CPMS training, Education and Training programme and activities, thematic workshops

14:00-16:30 ERN BOND future plan.


ERN BOND welcomes 22 new Full Members

ERN BOND welcomes the 22 new Full Members approved by the Board of Member States. 

ERN BOND grows to 55 expert centres in 20 EU countries.

List of applicants will be available by ERN BOND website.
2022 Rare Disease Day

28th FEBRUARY is the Rare Disease Day

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.

Are you organising/participating in an initiative for the Rare Disease Day? Share your event with the Coordination Team (

How to participate to the Rare Disease Day? By sharing your colors via social media, events, lighting buildings, monuments and homes, sharing experiences online and with friends, appealing to policy makers and shedding light on people living with a rare disease.

More information
Black Pearl Awards

The brand new Award category for Social Media is now open to public vote.

You can learn more about our three finalists and vote for your favourite one.

The winner will be announced at the live EURORDIS Black Pearl Awards Ceremony celebrating the amazing achievements of people living with a rare disease on 8th February (from 18:00 CET).

EJP RD Joint Transnational Call 2022
The Joint Transnational Call 2022 is open: 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.

Pre-proposal submission deadline: 16th  February 2022

Timetable, contacts, and more information here:

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: 1st March 2022 at 2:00 pm CET
More information
Innovative Health Initiative - Upcoming funding opportunities for 2022

The Innovative Health Initiative (IHI), a European Union public-private partnership funding health research and innovation, has published draft information on upcoming funding opportunities in 2022 in order to give potential applicants additional time to find or build a consortium and prepare a strong proposal.

The first call for proposals will be launched in the first half of 2022.

More information
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: 421 cases

  • Mineral conditions: 477 cases

Patient and Health Care Provider 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.

The survey will be open until February 21st.


Patient survey:

Health care provider survey:

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 to find out or make a private appointment.


COVID-19 and rare diseases: reflections and recommendations by the International Rare Diseases Research Consortium

The International Rare Diseases Research Consortium (IRDiRC) has published the results of its COVID-19 survey in the Rare Disease and Orphan Drugs Journal.

The article aims to identify the needs and challenges of the rare diseases community during the COVID-19 pandemic.

Read the full article

Oral Health-Related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration

X-linked hypophosphatemia (XLH) is a rare, hereditary, and lifelong phosphate wasting disorder characterized by rickets in childhood and impaired teeth mineralization. The objective of study is to evaluate the oral care pathway and the oral health-related quality of life (OHRQoL) of patients followed in an expert oral medicine department located within a Parisian hospital and working in close collaboration with an endocrinology department expert in this pathology.

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: “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.

Read the full article

ERN BOND webinars

Details of upcoming webinars and recordings of past events are available at



SAVE THE DATE! May 6th at 4 pm CET

Webinar "Composite endpoints including patient relevant endpoints (Quality of Life)" held by Dr. Johan Verbeeck (Hasselt University - Research Institute Center for Statistics)


ECTS Webinar Series: Bone, Muscle & Beyond

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

Next events:

  • Musculoskeletal health in ethnic and underserved populations, 17th February, 9 am CET

  • Cell Metabolism in the Skeleton, 24th March, 4 pm CET

For registering and viewing the full program visit:

Upcoming Events

The European Conference on Rare Diseases 2022

EURORDIS and Orphanet organise the European Conference on Rare Diseases 2022.

ECRD 2022 will take place fully online and is spread over 5 half days, from 27th June to 1st July 2022. Registration will open on 7th March 2022.

Poster abstracts submissions for the ECRD 2022 are now open until 31st March 2022.

More information

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

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

Early fee available until 18th March 2022

More information

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.

An ERN BOND Session is also included in the scientific programme and planned on 2nd July at 08:00-11:45 CEST. 

More information

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.

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

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