Complex Bone Disease Clinic

The Complex Bone OPD is a specialised monthly clinic at St. Vincent’s University Hospital for patients with rare bone diseases. It forms the adult component of the Irish Centre for the European Reference Network for Rare Bone Diseases (ERN BOND).

Who we treat:

This clinic is for patients with rare bone conditions. For a full list of relevant conditions, please visit:
Orphanet
ERN BOND

Conditions not covered:

• Osteoporosis
• Fracture follow-up
• Low bone mineral density related to other (non-bone) rare disorders

Research & patient consent

Patients attending this clinic may be eligible for inclusion in European rare disease registries. Participation is voluntary, and personal details will only be shared with formal patient consent. These registries have been reviewed and approved by the SVUH Research Ethics Committee.
Learn more: EURREB

The Complex Bone OPD team is actively involved in international research. Patients interested in rare disease research are welcome to ask about ongoing studies and can choose to be contacted about relevant research opportunities.
More on rare disease research in Ireland: Rare Disease Clinical Trial Network

Referrals

Referrals are accepted from:
– GPs
– Hospital consultants

For more information or to discuss a referral, please contact the Complex Bone OPD team at rarebones@svhg.ie

Patient & healthcare professional information

Support for patients with rare bone diseases

We understand that living with a rare bone condition can be challenging. The following resources provide support, information, and community connections:

• Osteogenesis Imperfecta Support – Brittle Bone Society (BBS)
• International XLH Alliance – International XLH Alliance  – Supporting individuals with X-Linked Hypophosphatemia
• European Rare Bone Disease Registries – EURREB (EuRRECa & EuRR-Bone)

If you would like to receive the patient information leaflet for registry enrolment, please email us at rarebones@svhg.ie

Information for healthcare professionals

For medical professionals seeking further information on rare bone diseases, guidelines, and research, the following resources may be helpful:

• Bone Health & Densitometry Guidelines – International Society for Clinical Densitometry (ISCD)
• Rare Bone Disease Reference Database – Orphanet

For referrals or queries, please contact the Complex Bone OPD team at rarebones@svhg.ie