To help inform and inspire, we are initiating a new video series called Advocate to Advocate. We will be regularly featuring brief video interviews with patient organization leaders around the word. Our goal is to share stories of how advocates started in their roles, and to share some lessons learned along their journeys.
Onto our first!
In 1982, Christine Lavery started the The Society for Mucopolysaccharide Diseases (MPS Society) - the only registered UK charity providing professional support to individuals and families affected by MPS and related Lysosomal Storage Diseases throughout the UK. Like many devoted patient advocates, Christine started the organization because of a personal introduction to the world of rare diseases: her son passed away following a diagnosis of MPS II, Hunter disease.
During her time at MPS she has taken the charity to new heights, employing 18 members of staff, managing a substantial research budget and a unique UK-wide advocacy service providing needs led support to nearly 1300 children and adult sufferers, their families and professionals in areas of home adaptations, special educational needs, access to new therapies, respite care, palliative care and pre- and post-bereavement support. Christine has served on the Department of Health Advisory Board on Genetic Testing and is currently a patient representative on the NHS England LSD Specialised Commissioning Advisory Group.
Christine was awarded the Member of the British Empire for her services to Metabolic diseases by the Queen in the New Year’s Honours List for 2002 and at the 2006 International Symposium on Mucopolysaccharide and Related Diseases received ‘A Life Time Award’ from the International MPS Community. Christine continues to promote the needs of MPS, Fabry and related Lysosomal Storage Diseases across nations and working closely with the MPS International Network.
In this brief interview, Christine is kind enough to share some of her thoughts with us on her experience as a patient advocate and what advice she’d give to those advocates just starting out today....
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