Speakers

  • Maureen Mayes's picture

    Maureen Mayes

    Professor, Rheumatology and Clinical Immunogenetics, University of Texas Medical School

    Maureen D. Mayes, M.D., is a rheumatologist and Professor of Medicine in the Division of Rheumatology and Clinical Immunogenetics at the University of Texas-Houston Medical School where she directs the Scleroderma Clinic. She is currently the Principal Investigator of the NIH/NIAMS funded ‘Scleroderma Family Registry and DNA Repository’ and is author of more than 140 publications relating to scleroderma, its complications and its treatment. She is also a member of the Scleroderma Foundation Medical Advisory Board. Dr. Mayes obtained her Masters of Public Health at the University of Michigan where she studied the epidemiology of scleroderma, resulting in a comprehensive analysis of the prevalence, incidence and survival of this disease. As Principal Investigator of the Scleroderma Family Registry and DNA Repository, she is currently studying the role of genetic factors in scleroderma susceptibility and disease severity. Dr. Mayes also conducts clinical treatment trials in scleroderma, both NIH and industry sponsored.

  • James Partridge's picture

    James Partridge

    Founder and Chief Executive, Changing Faces

    James Partridge is Founder and Chief Executive of Changing Faces, the leading UK charity supporting and representing people with disfigurements (www.changingfaces.org.uk) which is now a £1.6m organisation with a 30-strong staff team. Before setting up Changing Faces in 1992, James worked as a health economist in public health in the NHS in the ‘70s, and established a dairy farming business and taught A level economics in Guernsey in the ‘80s.

    He launched the charity after the positive response to his book, published by Penguin (1990), ‘Changing Faces: the Challenge of Facial Disfigurement’ (available from Changing Faces, www.changingfaces.org.uk). He writes and presents widely on disfigurement, disability, inclusion and social entrepreneurship in the UK and internationally. In November 2009, he was a guest newsreader for a week on national TV (Channel Five News), an appearance designed to foster acceptance and inclusion of people with disfigurements in society.

    Married with three ‘grown-up’ children, he lives in Guernsey and London.

    He was appointed an Honorary Fellow of the Royal College of Surgeons of Edinburgh in 2005 and has Honorary Doctorates from both of the Universities in Bristol, his birthplace. In 2010, he was the winner of Britain’s most admired Charity Chief Executive for 2010 and the Beacon Prize for Leadership. He was given the Directory of Social Change’s Lifetime Achievement Award 2012 following a public vote.

  • Maureen Sauvé's picture

    Maureen Sauvé

    Board Chair, Scleroderma Societies of Canada and Ontario

    Maureen is a scleroderma patient and has a long history of being active in the Canadian scleroderma community. She joined the Board of Directors of the Scleroderma Society of Ontario (SSO) in 2004 and the Scleroderma Society of Canada (SSC) in 2008. In 2008 she became a patient collaborator with the Canadian Scleroderma Research Group (CSRG) and participated in a group that drafted a consensus research agenda to address the psychological health needs of people living with Scleroderma. Subsequently, she played an integral role in a joint effort of SSC and the CSRG, the Canadian National Patient Survey on Health Concerns and Healthcare Needs. Most recently she has played a major role in the Scleroderma Patient-centered Intervention Network as a Chair of the Advisory Board and as a member of the Steering Committee and Project Committee.

  • Joep Welling's picture

    Joep Welling

    NVLE

    Joep Welling is the president of the Dutch patient organization for systemic autoimmune diseases (NVLE) and consultant for the Scleroderma Framed Foundation. From 2010, he has been actively involved as a patient representative and advocate in many national and international projects aiming to improve research and health care for patients with scleroderma, including the Patient Research Partner project of the European League Against Rheumatism (EULAR).

    Joep is no longer actively employed, but instead puts his energy into advocacy for the NVLE and the provision of information on scleroderma to professionals and patients. His professional background as a nurse (specializations intensive care and anesthesiology), infection control practitioner, as well as his work as an IT consultant for pharmacies and a pharmaceutical wholesaler, helps him achieve these goals and gain more attention for scleroderma.

  • Durhane Wong-Rieger's picture

    Durhane Wong-Rieger

    Canadian Organization for Rare Disorders