APSU News

World Congress of Internal medicine (wcim) 2010 in conjunction with physicians week 20-25th march 2010, melbourne

Highlight

The theme this year for the Australian Paediatric Surveillance Unit (APSU) session was on influenza H1N1 -09 pandemic in children. The session highlighted the severe complications of influenza including deaths among children aged 15 years. With the declaration of the H1N1-09 pandemic, APSU once again conducted prospective national surveillance for influenza. In addition to describing the impacts of H1N1-09 there was a unique opprotunity for comparison data collection in 2008. In addition to this the Paediatric Active Enhanced Diseases Surveillance (PAEDS) system which is a hospital based surveillance system was used to collect data on all child hospitalizations in four paediatric hospitals in four states.

The APSU session summarized results from surveillance studies and provided a population health perspective and valuable information on the use of anti-influenza antiviral agents and vaccination. We thank Dr. Jim Buttery for an excellent job in chairing the session which included the following presentations:

H1N1-09 Pandemic in Australia: an overview. Dr Dominic Dwyer
H1N1-09 Pandemic: how did our children fare? Dr Yvonne Zurynski on behalf of the PAEDS team
Treatments and vaccines: trials and tribulations. Prof Robert Booy

For presentations please see: http://www.wcim2010.com.au/presentations.asp

Other presentations from the APSU at the Congress:

How do women want to be informed about alcohol use in pregnancy? Poster presentation by Dr. Elizabeth Peadon
Supporting families and cinicians to manage rare childhood diseases: a view from Europe. Poster presentation by Dr. Yvonne Zurynski

Wednesday March 24; 09:00-10:30 PRSANZ plenary

Influenza H1N1 2009 pandemic: severe complications and deaths in children <15 years. Presented by Dr Yvonne Zurynski

Rare Diseases News

Rare Diseases Day 2010

The APSU will host a workshop on February 27, 2010 on "Rare Diseases - Impacts on Clinicians and Families". More information will be available in January 2010.

Special Needs Unlimited Group

With funding from the Steve Waugh Foundation, a special needs dentist from Newcastle (Peter King) has established a program in the Hunter for families of children with disabilities from remote areas: http://www.newcastle.edu.au/centre/fac/snug/

Each six day residential camp has families with children of the same or at least similar syndrome/disability, e.g. Rett syndrome or CP. The next camp is a mix of children with CHARGE syndrome, CP, CIPD and Down Syndrome. The camps are family focused with great activities for all of the siblings.

Families in regional areas (100Km from Newcastle and not in a metropolitan area) with a child with a disability can be referred onto the program by using the referral form at http://www.newcastle.edu.au/centre/fac/snug/index.html. Do you have a patient you think might be suitable? If so contact the program coordinator, Heather Hawes on 02 49215241 by email at Heather.Hawes@newcastle.edu.au. Alternatively contact the APSU on apsu@chw.edu.au.

Angelman Syndrome

Angelman Syndrome (AS) is a rare genetic disorder due to an error on a region of the 15th chromosome. Individuals with AS have global development delay and a severe speech impairment. The majority of individuals with AS don't speak. Individiuals with AS have a movement and balance disorder which ranges from mild to severe and generally begin walking between the ages of four and seven; however approximately 10% will never walk. Most individuals with AS have a seizure disorder which can be difficult to treat. Feeding disorders in infancy are common and some persist throughout childhood. Angelman Syndrome has gone largely undiagnosed or misdiagnosed as cerebral palsy or autism. It is estimated that one in every 10,000 to 20,000 children are born with AS.
Meagan Cross sits on the Board of Directors of the Foundation for Angelman Syndrome Therapeutics. She has a two year with AS and has devoted Molly's Voice to this condition.
Please make a difference to those affected by rare conditions in Australia and join us in petitioning the Australian Government to establish a body to support rare conditions in Australia. Sign here.

Spinal Muscular Atrophy Associaton of Australia Inc

The Spinal Muscular Atrophy Association of Australia Inc (SMAAA) is a non profit organisation. It was founded in 2005 by Julie Cini and her partner Ross Brownlaw after their first daughter- Montanna was diagonsed with SMA Type 1 and consequently passed away.
The organisation has grown rapidly especially over the last 12 months supporting families affected with SMA with equipment, financial assistance and moral support. The organisation is also involved with research and a national carrier testing program.
SMAAA will be hosting a dedicated conference on the 22nd and 23rd of February 2010. Information can be found at SMAAA Inc or by contacting the SMAAA office at (03) 9768-9052.

Media Release - Swine Flu update

Proffesor Elizabeth Elliott was interviewd last week to discuss the swine flu virus and the possibility of a second wave of the virus. She mentioned that in the last six months, nearly 600 children were admitted to hospitals in NSW with pandemic influenza, with many suffering severe complications and some requiring intensive care. Three times as many children aged 0-4 years old attended emergency departments this year with influenza-like illness, compared to our previous peak in 2007. Babies and toddlers were at particular risk of becoming infected.