Living with a rare disorder: Not such a rare experience
To mark Rare Disease Day 2017, HMRI and the Priority Research Centre GrowUpWell host the HMRI Rare Diseases Public Seminar, Tuesday 28 February.
Speakers and topics:
Dr Tracy Dudding-Byth | Matching faces: How using computer vision can help diagnosis of children with undiagnosed intellectual disability
Miss Jane Goodwin | A different but not so rare parenting journey: Exploring parents’ experiences of having a child with a rare disorder
Dr Aniruddh V. Deshpande | Surgeons and rare diseases in Newborn Children: Where we are and where we want to be
Dr Elizabeth Kepreotes | Rare disorders and advocacy in Australia today
The Hunter is home to many leading researchers and clinicians focused on improving the diagnosis, treatment and management of range of rare disorders. Research areas include:
- rare genetic diseases, and inherited forms of intellectual disability for which the genetic basis remains unknown;
- developmental disability (such as 22q11.2 deletion syndrome/VCFS);
- kidney diseases and complex surgical diseases on lung function of growing children; and
- factors that influence and impact upon parents' ability to cope and adjust to having a child with a diagnosed rare disease.
The seminar will be chaired by Dr Linda Campbell and Associate Professor Alison Lane, and will be followed by light refreshments.
Food: Sandwiches will be provided, with an optional gold coin donation always appreciated. Tea/coffee along with biscuits and fruit will also be provided.
Car Parking: Free car parking is available at the HMRI Building. If you require a Disabled Parking spot, or have special access requirements, please advise via registration below.
- 5.15 pm – 5.30 pm: Arrival and refreshments
- 5.30 pm – 7.00 pm: Welcome and Researcher Presentations
- 7.00 pm – 7.30 pm: Informal question time, networking and refreshments (end of event)