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Thursday, 22 Jul 2010
Keys to gluten intolerance found Anna Salleh, ABC. 22/07/2010 The identification of key molecules that make gluten toxic could one day help those with coeliac disease, says an international team of researchers. Professor Bob Anderson, of the Walter and Eliza Hall Institute of Medical Research, in Melbourne, and colleagues, report their findings today in the journal Science Translational Medicine.
People with coeliac disease must currently avoid eating gluten found in most breads, cereals, pasta, biscuits, beer and many other foods.
This is because gluten protein in grains such as wheat, barley and rye sets off an allergic reaction in people with coeliac disease, causing their immune system to damage their small intestine.
Ever since gluten was discovered as the dietary trigger for coeliac disease 60 years ago, scientists have been trying to identify which part of the protein is the culprit.
Scientists had identified one peptide in wheat gluten as a problem but now, Anderson and colleagues have revealed a much more complete picture of what can trigger the autoimmune response.
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Saturday, 17 Jul 2010
Alzheimer’s diagnosis method to change DPS Guide To Aged Care 16/07/2010 Medical experts are proposing changes to the way Alzheimer’s disease is diagnosed in order to treat it earlier before the onset of symptoms. This has been unaltered since 1984. With the use of brain scan technology, experts expect the number of diagnoses to double or triple once the guidelines are put in place. This also includes spinal tap procedure, which researchers believe will detect the disease up to 10 years before dementia sets in. Additional Information |
Saturday, 17 Jul 2010
Myhospitals Website Media Release
The Hon Nicola Roxon MP - Minister for Health and Ageing 17/07/2010 For the first time all Australians will soon be able to view important data about their public hospitals thanks to a new website being developed as part of the Government’s ambitious health reform agenda. The MyHospitals website will provide clear, comparable and user-friendly information about all Australian public hospitals in all states and territories, except Western Australia. People will be able to find, at the click of a mouse, the latest data on their local hospital. MyHospitals will show how that hospital performed compared to national average waiting times for elective surgery and emergency department care, list the medical services provided, bed numbers and if outpatient services, such as allied health and dental services, are provided. Once operational, all Australians will see – for the first time and from the one source – which hospitals throughout Australia are performing well, and which hospitals may need more targeted assistance to help lift their performance. Holidaymakers will be able to check whether a hospital at their destination offers accident and emergency services, and expectant mums in Sydney can check whether their nearest hospital has an obstetrics and maternity unit. Similarly, people in Launceston will be able to see how their local hospital compares against the national average waiting times for a range of elective surgery procedures, while residents in Adelaide will be able to see how many beds are provided in Queen Elizabeth Hospital. The website is being developed by the Australian Institute of Health and Welfare using the latest nationally comparable data from 2008-09. As a result of the COAG agreement in April this data has been provided with the agreement and support of every State and Territory government except Western Australia. The site will be ready in August. Measuring and publicly reporting on the accessibility, performance, quality and safety of our hospitals is a key component of our health reform plans. MyHospitals draws back the curtain on the performance of Australia’s hospital system and provides an unprecedented level of transparency as the Gillard Government works to deliver better health and hospital services for hard working Australians. The range of information available on MyHospitals will continue to be developed in the future, including providing data on private hospitals and reporting data for each hospital against a range of safety and quality measures. For all media inquiries, please contact the Minister's Office on 02 6277 7220
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Tuesday, 13 Jul 2010
Biobanks Guidelines for WA Health Released
The Guidelines for human biobanks, genetic research databases and associated data were released for use within WA Health institutions on Monday July 12th. Please follow the link below for a copy of the Guidelines.
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Thursday, 8 Jul 2010
Government delivers Carer Supplement and better support to carers
The Minister for Families, Housing, Community Services and Indigenous Affairs Jenny Macklin
Since 1 July 2010, more than 500,000 carers across Australia receive a $600 Carer Supplement, as part of the Australian Government’s Secure and Sustainable Pension Reform. This payment recognises the significant challenges facing hundreds of thousands of carers who make enormous sacrifices to care for a loved one. The payment will also be provided to recipients of Carer Allowance for each person they care for. Around 135,000 carers who receive Carer Allowance (child) will also be paid the annual $1000 Child Disability Assistance Payment from 1 July for each child they care for. The Government is also providing an additional $2 million in 2010-11 for emergency respite care under the Respite Support for Carers of Young People with Severe or Profound Disability Program, bringing total funding to $8.7 million next year.
Information Source: AHHA E-Healthcare Brief - 07 July 2010 |
Wednesday, 7 Jul 2010
2010 Human Rights Medals and Awards Awards now open!
Since 1987, the Australian Human Rights Commission has recognised the immeasurable contribution to Australian society of a wide variety of men, women and organisations committed to issues of human rights, social justice and equality through the annual Human Rights Medals and Awards.
Each year we receive a range of quality nominations for the Human Rights Medals, Young People’s Human Rights Medal and seven award categories: Law, Community (Organisation), Community (Individual), Literature (non-fiction), Print Media, Television and Radio. They may have made an outstanding contribution within their communities or through the practice of law, through writing books about human rights issues or through their work in the media. The web-section contains all the information you need to know about the 2010 Human Rights Medals and Awards, including award categories, how to enter, judging criteria, previous winners and how to buy a ticket to the awards ceremony. There’s also a section for media, with the latest news releases, and read all about our sponsors who kindly support the awards. |
Wednesday, 7 Jul 2010
The FH support group is a newly established group seeking members. We are keen to facilitate the involvement of Medical, nursing and allied health professionals, families living with FH, carers, supporters and advocates, in partnership with patients to help support those West Australians at risk of inherited high cholesterol and cardiovascular disease. The aim of establishing a FH Support Group is to improve information, communication and support services for families with FH in Western Australia and help prevent premature deaths caused by high cholesterol and cardiovascular disease. All interested persons welcome! Support Group Flyer: Familial Hypercholesterolemia Flyer 2010 Next Meeting August: Monday 9th at 7.00 pm Further Information
Phone Kristina on (08) 9389 6722 or Email: kristina@geneticsupportcouncil.org.au Proposed Activities and Services: Supporting health professional awareness
Providing a network for individuals and their families with inherited high cholesterol
Promoting healthier lifestyle options. About FH
Familial Hypercholesterolemia (FH) is an inherited disorder of cholesterol metabolism leading to premature coronary heart disease (CHD) - heart disease that occurs before the age of 55 years. The cause is a mutation in a gene. About 50% of 50-year-old men with FH have symptomatic coronary heart disease. In 25-49-year-old women, coronary heart disease is 100 times as frequent as in the normal population. Early diagnosis and effective treatment are the principles of management in FH. Most children and adolescents with FH are not diagnosed or treated. The prevalence of FH is 1/500 in Western Australia with only 20% of cases diagnosed. The early diagnosis and treatment of FH can delay or prevent the onset of premature CHD.
Additional Information:
http://www.athero.org.au/FH/index.htm
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Wednesday, 7 Jul 2010
Fast-tracking Disability Support Pension From 1 July 2010, DSP assessment will be simplified to fast-track more claimants who are clearly or manifestly eligible due to a catastrophic, severe congenital disability or cancer, so they can receive financial support more quickly. Under the new arrangements, Centrelink will check the claimant's medical report to see whether the person can be granted on the basis of diagnosis alone. In cases where the prognosis is unclear, Centrelink will contact the claimant's treating doctor and/or the new Centrelink Health Professional Advice Unit to discuss the person's condition, treatment regime and likely prognosis. Where the person is clearly eligible for DSP, Centrelink will grant the payment without the claimant undergoing a rigorous Job Capacity Assessment. This measure will help cut red tape for people with a severe disability, or who have been diagnosed with certain cancers who are clearly eligible, so they can receive financial support more quickly. Currently there are a limited number of circumstances where the DSP can be granted on the basis of diagnosis alone, without the Job Capacity Assessment. These are known as manifest grants of DSP, and include situations where a person has been diagnosed with: a terminal illness with a life expectancy of less than two years
permanent blindness
severe intellectual disability
severe disability that requires high level daily care
category 4 HIV/AIDS With the help of expert professionals, the Government has developed a further list (list one) of conditions such as rare diseases, neurodegenerative conditions and cancers which will be eligible for the DSP on the basis of diagnosis alone, such as: Creutzfeldt-Jakob disease
small cell cancer of the large intestine, prostate, lung, uterus and ovary
liver cancer
Angelman syndrome (a neurological disorder that causes severe learning difficulties)
Lesch-Nyhan syndrome (a catastrophic disease characterised by neurological dysfunction and cognitive and behavioural disturbances) The Government has also developed a second list (list two) of medical conditions which may, upon further investigation, be terminal or catastrophic, such as: Rett syndrome (a neurodevelopmental disorder involving severe intellectual and physical disability)
dementia
chronic lung disease
bone cancer
Centrelink will contact the claimant's treating doctor and/or the new Centrelink Health Professional Advice Unit to discuss the person's condition, treatment regime and likely prognosis.
These new arrangements will help respond to the 2009 report from the Commonwealth Ombudsman: Assessment of Claims for Disability Support Pension from people with acute or terminal illness. |
Wednesday, 7 Jul 2010
Acclaimed Geneticist Finds Basis Of Alopecia Areata
01 Jul 2010 On July 1, 2010, Nature Journal, the weekly, international, interdisciplinary journal of science, published an article that unveils the most exciting genetic research on alopecia areata to date. Led by the National Alopecia Areata Foundation Scientific Advisory Council member Dr. Angela Christiano, and using cases from the National Alopecia Areata Registry, a team of investigators from Columbia University Medical Center have found eight genes that contribute to alopecia areata, one of which has a possible role in the onset of the disease. Alopecia (AL-OH-PEE-SHA) areata (AIR-EE-AH-TAH) is an autoimmune skin disease that may result in total or partial loss of hair. Affecting over 5 million Americans, alopecia areata currently has no cure, and no treatment that works across the board. Part of the significance of this recent finding is that many of the genes found to be associated with alopecia areata are also associated with other autoimmune diseases, including rheumatoid arthritis, type 1 diabetes and celiac disease; all autoimmune diseases with pre-existing treatments. This discovery, therefore, is expected to lead to effective clinical trials. "Finally, we have the possibility of developing drugs that specifically target the mechanism behind the disease," adds Dr. Christiano. |
Wednesday, 23 Jun 2010
WA researchers find new genetic link for schizophrenia University of WA, 16 June 2010 Western Australian patients have helped local researchers discover a new genetic link for schizophrenia. Research led by Winthrop Professor Assen Jablensky, director of the Centre for Clinical Research in Neuropsychiatry at The University of Western Australia, and done in collaboration with Professor Luba Kalaydjieva, head of the Western Australian Institute for Medical Research's (WAIMR) Molecular Genetics Laboratory, has revealed the gene Neuregulin 3 (NRG3) is associated with a particular subtype of schizophrenia. Professor Jablensky said while most people thought schizophrenia was one disease, it was actually a group of disorders. "Our latest research finding, published in the international journal Molecular Psychiatry, has shown that variations in the Neuregulin 3 (NRG3) gene is associated with a subtype of schizophrenia in which patients suffer persistent psychotic symptoms but where their cognitive functioning - that is their ability to think, perceive, remember and reason - is relatively unaffected," he said. Professor Kalaydjieva said understanding the genetic differences between subtypes of schizophrenia was crucial for being able to better treat those affected by this potentially-disabling illness. "It will ultimately help in the development of new drugs targeting specific dysfunctions and lead to more personalised treatments which is good news for patients," she said. The NRG3 gene, which is located on human chromosome 10, has recently been identified as one of the several genes that differentiate the genome of modern humans from the genome of the Neanderthals, suggesting an evolutionary selection for enhanced cognition. The research was conducted as part of The Western Australian Family Study of Schizophrenia (WAFSS), a WA Health Centre for Clinical Research in Neuropsychiatry project - and involved studying more than 400 people with schizophrenia and 223 people with no history of mental illness. WAIMR director Professor Peter Klinken congratulated the Professors on their work. "Schizophrenia affects about one per cent of the population or one in 100 people, so it is well designed research, such as this, that has the potential to make an enormous difference to the many families who are touched by it," he said. Media references
Sarah Hayward (+61 8) 9381 8237 / (+61 4) 01 141 483
Janine MacDonald (UWA Public Affairs) (+61 8) 6488 5563 / (+61 4) 32 637 716 |
Thursday, 3 Jun 2010
Featured Articles:
- Preimplantation Genetic Diagnosis - Inquiry into a National Disability Long-term Care and Support Scheme - GPs & prenatal screening Member Profile
- The Australian Cystinosis Support Group |
Wednesday, 2 Jun 2010
World Health Assembly focus on birth defects Delegates at the sixty-third World Health Assembly, a major international meeting between senior World Health Organization (WHO) officials and national Health Ministers held in Geneva last week, voted to adopt a range of resolutions relating to public health around the world. These included a resolution to address the problem of birth defects, especially in low- and middle-income countries, calling on Member States ‘to prevent birth defects wherever possible, to implement screening programmes, and to provide ongoing support and care to children with birth defects and their families’ (see press release: http://www.who.int/mediacentre/news/releases/2010/wha_closes_20100521/en/index.html ). |
Thursday, 18 Mar 2010
Advance Health Directive In Western Australia, there are new laws that allow adults to plan for a time when they are unable to make their own medical treatment decisions. What is an Advance Health Directive? - An Advance Health Directive is a legal document in which adults can set out in writing their decisions about future treatment.
- Treatment includes medical, surgical and dental treatment and other health care.
- In an Advance Health Directive, adults can specify situations in which they wish to either provide consent, or refuse consent, to future treatment.
- An Advance Health Directive comes into effect only if you are unable to make reasonable judgments about the treatment decision at the time that the treatment is required.
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Wednesday, 24 Feb 2010
Living with a rare condition
The Genetic Support Council (GSCWA) is seeking feedback about starting a genetic support group for people affected by rare conditions/disorders and for whom there is no specific support group available.
Genetic support groups can be a useful resource for individuals and families living with a genetic. Sharing their knowledge, experience and support are one of the key services that these groups are able to provide.
The GSCWA conducts forums for members on issues of interest or concern to enable members views to be represented to the wider community and State and Federal Governments. Membership is free!
Any families or individuals interested in finding out more please contact Kristina.
Further Information
Find info on a rare conditions/disorders
Articles
Read about the various types of patient groups
Living with a rare condition/disease Online stories: |
Wednesday, 24 Feb 2010
NEW rare disorders website
This new online network is dedicated to connecting patients, families and healthcare professionals affected by rare medical disorders.
RareShare is a unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders.
Why Rare Disorders?
While rare disorders seem to impact only a small portion of the population, together they affect over 30 million people in the United States and Europe. Due to the comparably low level of occurrences of individual rare disorders, there is often a lack of information and support for patients and their families. We're working to change this. RareShare Membership
It's free and easy to join RareShare. Here are just a few of the reasons to sign up for an account: * Communicate with others that are affected by the same disorder
* Contribute new information and personal experiences to your disorder community
* Find additional resources specific to your disorder |
Thursday, 11 Feb 2010
 Do we have the right information about your support group or organisation? The Genetic Support Council is updating the “Directory of Genetic Support Groups and Community Support Organisations in Western Australia” If you are listed in the directory and your support group or organisations details have changed and you have not been contacted by the Council please ph: 9389 6722 or email info@geneticsupportcouncil.org.au This new edition will now include the condition/syndrome Synonyms and Subdivisions, by including this, people can browse by condition to access the right support group. These categories will be included online for browsing by condition once the Councils new website has been developed. If you belong to a support group or organisation which does not appear in our directory and you would like to be listed please ph: 9389 6722 or email info@geneticsupportcouncil.org.au
The aim of the Directory is to assist with referral for individuals, and families with either a known or newly diagnosed genetic condition or predisposition. The Community Support Organisations listed in the 2nd section of the Directory provide additional support or assistance to individuals and families. - Available in PDF (Requires the latest Acrobat Reader)
- Online version is continually updated
- Please contact our office if you are having any difficulties downloading this document.
P: (08) 9389 6722 Please Note: PDF documents in this site are formatted using the Accessibility Features in-built to Adobe Acrobat 8.0.
Attention visually impaired visitors: To use common screen reading programs with PDF documents, please visit access.adobe.com, which provides a set of free tools that convert PDF documents to simple HTML or ASCII text |
Friday, 30 Oct 2009
The Genetic Support Council's Annual Report 2009 is now available: |
Wednesday, 14 Oct 2009
The Genetic Support Council of Western Australia Biobanking in WA – Position Statement is now available: |
Thursday, 18 Jun 2009
Lowe Syndrome
A family from Western Australia who is living with Lowe Syndrome would like to make contact with others living with this condition. Synonyms of Lowe Syndrome
• Cerebro-Oculorenal Dystrophy
• LS
• Lowe's Disease
• Lowe-Bickel Syndrome
• Lowe-Terry-MacLachlan Syndrome
• OCRL
• OCRL 1
• Oculocerebrorenal Dystrophy
• Oculocerebrorenal Syndrome
• Renal-Oculocerebrodystrophy
• oculocerebrorenal syndrome
• oculocerebrorenal syndrome of Lowe Please contact Kristina at the Genetic Support Council of WA Ph: 08 9389 6722 |
Thursday, 18 Jun 2009
Monomelic Amyotrophy
A person from Western Australia who is living with monomelic amyotrophy would like to make contact with others living with this condition. Synonyms: - Benign Focal Amyotrophy
- Hirayama syndrome
- O'Sullivan-McLeod syndrome
- Sobue disease and Single limb atrophy
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