ERN BOND
European Reference Network
on rare bone diseases
Welcome to our website
Network
ERN BOND is one of the 24 existing European Reference Networks (ERNs). In particular, ERN BOND aims to improve access to high-quality healthcare for patients suffering from rare bone diseases.
Mission
ERN BOND aims to implement measures that facilitate multidisciplinary, holistic and patient-centred care provision for people living with rare bone disorders, ensuring realisation of their fundamental human rights.
Vision
The ambition of ERN BOND is to bring rapid interchange of information, skills and practice to shorten time to diagnosis and treatment, supporting patients affected by rare bone diseases and their families.
ERNs for rare and complex diseases
European Reference Networks are unique and innovative cross-border cooperation platforms between specialists for the diagnosis and treatment of rare or low prevalence complex diseases. 24 thematic ERNs, gathering over 900 highly specialised healthcare providers from 26 countries, are working together on a wide range of issues, from bone disorders to haematological diseases, from paediatric cancer to immunodeficiency.
The ERN on rare bone diseases
ERN BOND aims to promote good quality and safe care to patients with rare bone disorders. European Reference Networks allow doctors to share their knowledge, data and resources. Here’s the story of Elisa, who suffers from OI.:
What I am expecting from the ERNs is more research in order to improve the quality of life of people affected by rare disorders. – Elisa
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Remember to register for the first event in the Glasgow Webinar series in Rare Conditions: 'Hypophosphatasia- Diagnosis and management'. Register here: https://hypophosphatasia-webinar.eventbrite.co.uk
@sfa2u @AgnesLinglart @eurreca @ern_bond @BritSPED @ECTS_soc @EuroSPE @RareEndoERN #Hypophosphatasia https://twitter.com/ORCGlasgow/status/1325822638695075844
Save the date for the first event in the Glasgow Webinar Series in Rare Conditions: 'Hypophosphatasia: Diagnosis and Management'.
We have some fantastic speakers lined up; see the programme below! Please register here: https://hypophosphatasia-webinar.eventbrite.co.uk
@sfa2u #rareconditions #Glasgow
@eurreca @EuRRBone as a model for data access and governance policies for rare disease registries @RareEndoERN @ern_bond @EuroSPE @ESEndocrinology @EJPRareDiseases
https://www.mdpi.com/1660-4601/17/23/8743