Living with a rare disorder: Not such a rare
experience
To mark
Rare Disease Day 2017, HMRI and the Priority Research Centre GrowUpWell are hosting the HMRI Rare Diseases Public Seminar, Tuesday
28 February 2017. The event starts at 5:15pm, is FREE of charge, and offers FREE PARKING.
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.
Cost: FREE
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.
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.
Event
Schedule
· 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)
