In view of the challenges many Gaucher patients have faced during the coronavirus pandemic, the focus of this year's IGD campaign is home therapy.
The second of our educational webinars on home therapy, this one will take place on 1 October at 3pm (GMT) to mark #IGD2020 and we will be joined by Niamh Finnegan (clinical nurse specialist from the Royal Free hospital, London) and Callum Stoodley, partner of a GD3 patient who will both share their experiences and the benefits of home therapy.
There will also be the opportunity to ask questions of Derralynn Hughes from the EWGGD who have recently published their statement on Home Therapy https://ewggd.overcome.fr/ewggd-newsletter/
We will also be joined by Fern Torquati and Kate Theochari, two patient group representatives who have advocated for home therapy in their own countries of Italy and Greece respectively.
Prof. Derralynn Hughes is Clinical Director Haematology, Oncology and Palliative Care, Lead Cancer Physician at the Royal Free London NHS Foundation Trust and Professor of Experimental Haematology at the University College London, UK. She has also been recently appointed as Clinical Director of the NCL London Cancer Alliance. She has clinical responsibilities in the area of Haematology and Lysosomal Storage Disorders and is chair of the anaemia clinical practice group. She directs the research programme in the LSD unit research laboratory where interests include understanding the pathophysiology of phenotypic heterogeneity in Fabry Disease and bone related pathology in Gaucher disease and malignancy. Prof Hughes is Principle Investigator of a number of clinical trials examining the efficacy of Enzyme, Chaperone and gene therapies and other new agents in the treatment of Gaucher, Fabry, Pompe and MPS disorders. A particular interest relates to the clinical and biological effects of bone disease and malignancy in Gaucher disease. She is an author of over 150 papers in the area of macrophage biology and lysosomal Storage Disorders.