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Children have the right to rare disease support

Children have the right to rare disease support  Children living with rare disease, and their families, have the right to join groups that support them. Support groups and non-profit advocacy groups provide help to children and families living with rare disease. These groups have well developed initiatives and networks, promote public awareness, medical care, research, and provide other helpful activities for children and families living with rare disease. Groups may be condition-specific, general support […]

UNCRC Series – Children should be involved in decisions about their health when possible

Children should be involved in decisions about their health when possible. Parents often make medical decisions for children because they are considered to have reduced decision-making capacity. Despite this, it is important to include children in decision making to a reasonable extent. To make decisions about health they must provide informed consent. Informed consent is: […]

Children have the right to a full life

Children have the right to a full life. This doesn't relate only to the length of their life, but the quality of life they have.  Children with rare disease often live with suffering and the chance of early death, so they need things like relationships, work, play, education and enjoyment. Healthy children and children with rare […]

UNCRC series – Rare Diseases are common

Rare diseases are a major child health issue. Although each rare disease is rare, as a group, they are common.  Up to 10% of the population may have a rare disease. Rare diseases are often associated with pain, disability, uncertainty and early death.  New information suggests that more than half of rare diseases start in […]

Rare disease is a global issue

The United Nations Convention on the Rights of the Child (UNCRC) applies to children across the world. Rare disease can also impact any child or family regardless of their race, social status, abilities, or family history. Even though each rare disease only affects a small number of people (often defined as one person in 2000), there are […]

Care of off shore asylum seekers

Recommended watch A documentary about the medical care of people seeking asylum offshore, duty of care and medical ethics. Ethical conflicts erupt for doctors as the Australian government overrides their clinical decisions for refugees. What happens to their medical ethics? What happens to their patients? This documentary exposes a medical system where the best interest […]

ARACY Fiona Stanley Forum 2019

This year’s Fiona Stanley Forum, to be held on the eve of the expected Federal Election, will see the launch of @ARACYAustralia policy priorities for the next Australian Government. www.aracy.org.au

Rare Diseases Day 28th February 2019

Progress in the area of Rare Diseases  Whilst children and their families living with rare diseases undoubtedly face enormous challenges, it is a time of increasing opportunity and convergence, in Australia and internationally. The current consultation around the National Rare Diseases Strategic Framework is particularly notable not only because of its great importance to the […]

DFTB 19

DONT FORGET - DFTB 19 DFTB19 is an acute paediatric conference, which will run in London. After two successful years in Aus, it’s time to come over to the other side of the world. DFTB19 is run by the team at DontForgetTheBubbles.com, an award-winning and internationally recognised online resource that specialises in providing up-to-date medical education […]