Deadline: 30 September 2019
A rare disease is a disease that occurs infrequently or rarely in the general population. In order to be considered rare, each specific disease cannot affect more than a limited number of people out of the whole population. The number of rare disease patients varies considerably from disease to disease.
- Rare diseases are characterized by a large number of broad and diverse disorders and symptoms that vary not only from disease to disease, but also within the same disease
- 80% of rare diseases have identified genetic origins while other rare diseases are caused by infections, allergies, chemicals/radiation or a combination of environmental and genetic factors
- Rare diseases often begin in childhood, continue throughout life, are disabling and life threatening and are difficult to diagnose
- Most rare diseases have no cure
- On average, the life expectancy of rare disease patients is significantly reduced
- Rare diseases are often chronic and complex, requiring many different specialised health services and community support
- Families and carers of children with rare diseases experience significant psychological stress due to stigmatisation, social isolation, unemployment, diagnostic delays, lack of information and difficulty accessing appropriate health care
- The impacts of rare diseases go beyond affected individuals. They have wide-reaching impacts on families and carers, health professionals, health resources and the wider community
What is needed for people living with Rare Diseases in Australia?
- Equal access to quality healthcare
- Greater coordination of health services
- Greater recognition of the health, economic, and psychosocial challenges they face – Increased research effort nationally and internationally
- New diagnostic procedures and treatments
- Accurate and reliable information and education about rare disease for families and health professionals
- A coordinated national plan
The Foundation will consider funding:
- Government approved Medicines
- Some, but not all, minor house renovations or items that improve the quality of life for the applicant and their family.
In line with their philosophy to fund items that are ineligible to be funded from other sources, applicants must identify:
- Other eligible sources of funding for applicants request
- If applicants have previously received support from other charitable organisations or
- Received support from the Steve Waugh Foundation in the past
WHAT THE FOUNDATION DOES NOT FUND?
The Foundation does not provide financial assistance for, and is not limited to:
- purchase of new or used vehicles
- vehicle modifications
- major house modifications
- respite care (for individual grants)
- rent, mortgage payments, household utility expenses
- competitions ie Sport/Paralympics
- conferences, workshops, meetings
- travel – both local and international
- research and clinical trials
- The Steve Waugh Foundation (‘the Foundation’) will support children and young adults aged 0-25 years who have a rare disease with a prevalence of at least 2:100,000.
- Applicants must be an Australian Citizen or an Australian permanent resident of at least 5 years to gain assistance from the Foundation, and:
- Have a recognised rare disease as identified on ORPHANET;
- Have an Australian Medicare Card
- Have already made an application for Government funding assistance for the requested item, either State or Federal. eg NDIS
- The rare disease has been formally and officially diagnosed by a Paediatrician and/or Geneticist.
- Applicants have and can provide evidence of the diagnosis of the rare disease signed off by a Paediatrician or Geneticist.
- Applicants have and can provide medical, health and other documentation or support material required as part of this Application.
- Details of rare disease/condition and applicants medical specialist’s (not GP or therapist) email address
- Proof (e.g, passport/Medicare card/birth certificate) of minimum 5 year Australian residency/citizenship
- Private health insurance information
- Government assistance details e.g. National Disability Insurance Scheme (NDIS) plan
- Quote/invoice for items or services being requested
- Income and expenses details
- Tax return/payslip
How to Apply
Applications must be submitted online via given website.
Eligible Country: Australia
For more information, please visit https://www.stevewaughfoundation.com.au/grants/grant-rounds-key-dates/