Dear friend,

ERN BOND welcomes 22 new Full Members

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.

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.

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: www.ec.europa.eu/eusurvey/runner/DelphiPROMsEuRRECaEuRRBonePatients

Health care provider survey: www.ec.europa.eu/eusurvey/runner/DelphiPROMsEuRRECaEuRRBoneclinicians


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.

Publications

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.

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.

Webinars
ERN BOND webinars

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

EJP RD TRAINING webinar

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)

Upcoming Events

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

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. 

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.