Searchable abstracts of presentations at key conferences on calcified tissues

ba0006p198 | (1) | ICCBH2017

Hearing the patient's voice: a focus group listening to the child and parent experiences of living with rare bone diseases

Massey Jill , Phillips Katie , Cornish Michael , Lawson Caron , Irving Melita , Cheung Moira

Objectives: • To establish the child and family experience of attending multi-disciplinary clinics within the rare bone disease service at Evelina London Children’s Hospital.• To gain an understanding of the daily challenges the children, young people and families face.• To understand how the tertiary multi-disciplinary team may support the child, young person and family.<p class="ab...

ba0007p74 | (1) | ICCBH2019

Burosumab can improve pain and quality of life for children with X-linked hypophosphataemia and their families: a London centre's experience

Gilbey-Cross Robyn , Sandy Jessica L , Morris Mavali , Cocca Alessandra , Sakka Sophia D , Massey Jill , Cheung Moira S

Objectives: Burosumab, a monoclonal antibody that therapeutically targets the underlying elevated levels of fibroblast growth factor 23 (FGF23) in X-linked hypophosphatemia (XLH), is now available to children out of trial conditions. Our objective was to describe the effect of burosumab on quality of life, functionality and pain in a clinical setting.Methods: Questionnaire tools were completed at baseline, 6 and 9 months for 9 children with XLH starting ...

ba0007p192 | (1) | ICCBH2019

Developing a high chair to meet the needs of infants with Achondroplasia; a collaboration between Evelina London Children's Hospital and Brunel University

Massey Jill , Phillips Kathryn , Lawrence Jack , Davies Angharad , Harris Laura , Cocca Alessandra , Spinelli Gabriella , Garaj Vanja , Irving Melita , Cheung Moira

Achondroplasia is the commonest form of dwarfism. Key features in infancy impacting positioning are rhizomelia, spinal deformities and large head size. Both standard high chairs and specialized adaptive seating are currently inadequate to meet the needs of these infants. This is due to their anatomical limitations and the guidance for supportive positioning in this group of children, which recommend that a flat, elongated spine is optimal, avoiding a ‘C shape’, as is...