Request for the provision of information, support and advice in relation to Rare Diseases.

Rare diseases are those with a prevalence of less than one in 2000. It is estimated that there are between 5000 and 8000 distinct rare diseases, collectively affecting approximately 3.5% of the Australian population. Rare diseases have different causes but share many commonalities. They are typically chronic, debilitating, life-threatening, non-preventable and incurable. Many onset during childhood and continue throughout life, and most have no effective treatments. The high level of complexity means that people living with rare diseases require access to multiple services from a wide range of government and non-government service providers in a number of service sectors, including health and disability. Rare diseases impact significantly on people living with rare diseases, carers, families, communities and health systems.

WA Health is committed to providing high quality health care for people who need it most, including among people living with rare diseases. It is critical that the rare disease sector is actively engaged to provide input to the development and ongoing implementation of health care policies, programs and services for rare diseases. Further, recent stakeholder consultations have explored the unmet needs of the rare disease sector in relation to health care. Some key issues identified were a lack of access in Australia to information and education on rare diseases, including information on existing services for rare diseases, and a low profile for and awareness of rare diseases among health professionals and the wider community.

This Request seeks Offers for a comprehensive service that achieves the following service outcomes:
1. People with rare diseases have timely access to relevant, up-to-date information about their rare disease and the healthcare and other services available to them in WA.
2. The collective voices of the community of people with rare diseases, their family and carers, are included in health policy and strategic decision making
3. Health professionals are more aware of rare diseases.
4. Stakeholders involved in the support and health care of people with rare diseases, their families and carers are more connected to facilitate integrated, coordinated health care and support.