Meet the inspiring people speaking at our Community Conference!

Andrew Morris, Consultant and Senior Lecturer in Paediatric Metabolic Medicine at Manchester University Hospitals

Andrew Morris is a consultant and senior lecturer in Paediatric Metabolic Medicine. He works in the Manchester University Hospitals on the Willink Metabolic Unit, which serves the North of England. He has been a consultant since 1996, in Newcastle-upon-Tyne and at Great Ormond Street Hospital, before moving to Manchester.

He has wide experience of inherited metabolic diseases, with a particular interest in teaching. His research has concerned disorders of fatty acid oxidation and the mitochondrial respiratory chain, newborn screening and homocystinurias. He is on the Executive Committee of E-HOD and led the group writing guidelines for the management of classical homocystinuria

Danae Bartke, Executive Director at HCU Network America

Diagnosed at the age of 10 with classical homocystinuria (HCU), Danae’ Bartke struggled with the prescribed treatment of the low-protein diet and medical formula. At 24 years old she suffered a blood clot, which was the catalyst that she needed to get back on track and seek community support. She first connected with the PKU community.

After feeling inspired by the larger low-protein community, in 2016 she co-founded HCU Network America. She speaks openly about dealing with her history of symptoms and advocates for universal newborn screening and access to medical nutrition, in hopes others will receive a timely diagnosis and treatment. 

Dr Kassim Javaid, Consultant Rheumatologist at Oxford and Professor of Osteoporosis and Adult Rare Bone Diseases

Dr Kassim Javaid specialises in common and rare metabolic bone diseases.

He is the clinical lead for Oxford Fracture Prevention Service, and the national Fracture Liaison Service Audit for England and Wales and serves on the Board of the Fragility Fracture Network. He also is the clinical lead for the Oxford Rare bone disease service for adults and Rare Disease Collaborative Network for Adult Rare Bone Diseases.

His research interests include the epidemiology of musculoskeletal diseases with a focus on rare bone disorders and secondary fracture prevention.

Thines Ganeshamoorthy, Senior Policy Official at the UK Civil Service and Co-Chair of the Adult Rare Bone Disease Network

Thines is a Senior Policy Official working in the UK Civil Service. Alongside this, he is also the current co-chair of the Adult Rare Bone Disease Network working to bring together expertise from multiple disciplines to improve the lives of individuals living with rare bone diseases.

Thines has Type 4 Osteogenesis Imperfecta (OI) and has been supporting the work of the BBS since 2013/14 when he organised a charity masquerade ball during his first year at UCL to raise money for our charity. Since then he has been a firm supporter of our work and has been involved in various capacities providing input on strategy, policy and supporter involvement and now serves on the Board of Trustees.

He has previously worked and volunteer for numerous health and disability charities and causes, including Leonard Cheshire, Scope and National Children’s Bureau.

Emeritus Professor Sufin Yap, Honorary Consultant Paediatrician in Metabolic Medicine Sheffield Children’s NHS Foundation Trust

Emeritus Professor Sufin Yap recently retired from her clinical work in January 2025, after more than 12 years at Sheffield Children’s Hospital, UK. She continues on as an Honorary Consultant Paediatrician in Metabolic Medicine at Sheffield Children’s Hospital and Honorary Senior Lecturer at the University of Sheffield, UK. Prior to that, she was a Professor of Paediatrics (inherited Metabolic Disorders) and Consultant Metabolic Paediatrician at the Faculty of Medicine and University Malaya Medical Center, Malaysia. From 2000-2007, she was a Consultant Metabolic Paediatrician at the National Center for Inherited Metabolic Disorders, Dublin, Ireland. She has gained metabolic experiences internationally and has practiced for more than 35 years in the field.

Professor Yap is an advocate of very high standards of patient care in the area of inherited metabolic diseases, especially the importance of early detection and commencement of treatment in preventing major complications. She completed her Doctorate in Classical Homocystinuria cum laude and the resultant publications have won several prestigious awards in excellence in clinical research from the Royal Academy of Medicine, Ireland. She is widely published in International Journals and book chapters as well as presented over 190 invited lectures worldwide. She willingly and actively provides voluntary clinical consultations/advice to international colleagues who seek her expertise.

Professor Yap is currently the Chief Investigator of the PROTECT study (PRospective Observational study of long-TErm Carglumic acid for the Treatment of PA and MMA – ClinicalTrials.gov NCT04176523). She has a wide interest in clinical research in metabolic diseases, particularly in the nutritional treatment and clinical outcomes.

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