Porphyria Association Inc. Australia
Ms. Jessica Betterridge President Jessica oversees the many passionate volunteers that kindly donate their time to this organisation. She also works closely with the heads of other organisations, researchers, doctors, patients, family members and other medical professionals in order to promote awareness and understanding of all the porphyrias. In 2015 Jessica became a member of the Board of the Porphyria Association and represented them at the International Congress of Porphyrins and Porphyrias held in Dusseldorf, Germany in late 2015. Jessica was elected President at the 2016 Annual General Meeting. Originally from the beaches of the Sunshine Coast in Queensland she now calls Melbourne home. Jessica has a Bachelor of Construction Management with Honours from Deakin University, a Bachelor of Environments (Architecture) from the University of Melbourne and is currently completing a Master of Architecture/Doctor of Philosophy in the area of Paediatric Healthcare Architecture at the University of Melbourne.
Mr. Sean Hegarty Vice President Sean has been a committee member of the Association since 2008. He was president from 2008 until 2011 when he became Secretary. Sean works closely with Jessica and the other board members to ensure the Association runs smoothly. He is involved in many of the operational decisions, offering his knowledge and wisdom. Sean has a particular interest in porphyria due to a personal experience of Hereditary Coproporphyria, one of the acute porphyrias. He first came into contact with the Porphyria Association when seeking information about porphyria for himself and a number of family members. Sean is a registered Occupational Therapist who has worked in the mental health sector for the past 11 years. He is currently General Manager of Mental Health Services, Victoria & Tasmania at Wellways Australia.
Ms. Amy Schidenler Treasurer As Treasurer, Amy's administers and manages the financial interests of the Porphyria Association Inc. Amy began volunteering for the Association in 2012 and became Treasurer in 2015. Amy has a Master of Genetic Counselling from the University of Melbourne and it was through that course that she initially volunteered with the Genetic Support Network of Victoria and then became involved with the Porphyria Association. Amy currently works as a Senior Clinical Research Assistant in the Department of Medicine at the University of Melbourne. She heads a team of research assistants and works on a number of genetic and clinical projects with researchers both locally and internationally.
Mr. Wolfgang Haehr Secretary and Educational Coordinator Wolfgang has two separate roles within the Association, the first being an executive position as Secretary, which he commenced in 2016. His additional role being the Education Coordinator. As Secretary, Wolfgang manages the Association's reporting and lodging responsibilities, manages the register of members and takes care of many odds and ends relating to the general functioning of the Association. Being Education Coordinator for the Porphyria Association, Wolfgang is responsible for ensuring that the Association is in keeping with with the latest published medical literature. His role also includes training all other volunteers to insure that their knowledge of the porphryia's is current and is based on best practice principles and evidence based medicine. Wolfgang also works with both medical specialist's and other allied heath professionals to develop our educational material that is published on our website or used for other educational campaigns. This insures that the Association's website is as accurate as possible and provides the general public with evidence based information pertaining to the porphyrias. Wolfgang has a Bachelor of Biomedical Science from Deakin University and recently completed his Honours year in Medical Research in 2017. in 2018 Wolfgang commenced his Master of Clinical Pathology degree.
Ms. Rubi Ramzan Postgraduate Student Volunteer - Patient Liaison Officer Rubi is the first point of call for people contacting the Association. Her role includes answering phone calls and emails from people who have porphyria, think they may have porphyria or have loved ones who have porphyria. This includes providing information and resources about porphyria, advising people of specialists and offering peer support. Rubi has Bachelor of Biomedical Science from Deakin University majoring in bio-technology. In 2019 she plans to commence her Master of Genetic Counseling degree at the University of Melbourne.
Porphyria Association Inc. Committee Members Professor Edward Janus Associate Professor Peter Stewart Associate Professor Max Wolf Dr. Cindy Towns Ms. Anna H
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