Frequently Asked Questions
 

THESE QUESTIONS APPLY TO INDIVIDUAL ASSISTANCE ONLY AND ARE NOT FOR PROJECTS, PROGRAMS OR RESEARCH.

What is the Steve Waugh Foundation Australia?

• The Foundation is a registered Charity in Australia.
    
• The Foundation is committed to a coordinated approach to the service, identification, treatment and research of rare diseases to improve the quality of life of children affected by rare diseases (0-25 years of age).

Our Philosophy

• We recognise due to resources and financial limits we will not be in a position to support all individuals, family and community needs in the area of rare diseases. Our philosophy is to support rare diseases that are unable to get support from other sources.

What is the criteria for funding?

• Applicants must be between the age of 0-25 (applicant must not turn 26 in the year the application is submitted).
   
• Be an Australian citizen or Permanent Resident of Australia.
   
• Have an Australian Medicare Card.
   
• Have a recognised rare disease as identified on ORPHANET (An International recognised list of rare diseases and reference for medical health professionals) Refer to Rare Diseases Listing.
   
• The rare disease has been formally and officially diagnosed by a Paediatrician and/or Geneticist, and has a name.
   
• You have and can provide evidence of the diagnosis of the rare disease signed off by a Paediatrician or Geneticist.
   
• You have and can provide medical, health and other documentation or support material required as part of this application.

Do I have to be an Australian citizen to get support from the Steve Waugh Foundation?  

• Yes, you must be an Australian Citizen or an Australian permanent resident to gain assistance from the Foundation.

How do I apply for funding from the Steve Waugh Foundation? 

• Check that you meet all Foundation criteria, refer to criteria list and follow ALL instructions carefully. You must complete ALL requirements of this application process.
    
• If you meet the Foundation’s criteria please make sure you complete all sections in Part One and Part Two of the application form.
    
• Documents must be completed with every section filled in to be accepted. The Foundation will not accept partial or incomplete application forms.
    
• All invoices or quotes supplied must come directly from the supplier of the product and be valid at the time of the application and for a minimum of 3 – 6 months thereafter.
    
• You must ensure you provide a carefully considered and costed funding request and include everything that needs to be covered and specific to this application request. Should your application be successful, any additional or extra costs that have not been included or considered may not be covered by the Foundation.

Who makes the decision on my application? 

• Every application is reviewed by the Foundation’s Grants Committee. The Grants Committee works directly with a Medical Health Advisory Committee who provide advice on a case by case basis.

If I do not qualify for funding can the Foundation help me get funding from other organisations? 

• We review every application that we receive and like all charities we wish we could help all children and their families that apply to our Foundation. There are 8,000 known rare diseases affecting up to 400,000 children in Australia. Please refer to other sites and links that may be able to help you with your needs. Click here to go to Important Links.

What is a rare disease?

One difficulty of accurately estimating prevalence or incidence rates for rare diseases is the lack of population based epidemiological research on rare diseases. This is compounded by a general perception that rare diseases have minimal impact and are therefore considered less important and a low priority for research. Paradoxically, however, rare diseases are common. There are approximately 8000 known rare diseases, collectively affecting up to 10% of the population or over 2 million Australians including ~400,000 Australian children. Rare diseases have the following common features:

• Most begin in childhood and continue throughout life
   
• Obtaining a definitive diagnosis is often difficult and delayed
   
• Many rare diseases have no cure but some can be prevented
   
• Neurological and intellectual disabilities occur in about half of all cases regardless of disease type and lead to loss of independence and opportunities
• Families experience isolation, psychological and financial stress
   
• Health professionals have inadequate access to information, education and resources
• Of deaths in children aged < 1year 35% are due to rare diseases
  
  
• Of deaths in children aged between 1 and 15 years, ~10% are due to rare diseases

_{Key references:}

_{• Zurynski Y, Frith K, Leonard H, Elliott E. Rare childhood diseases: how should we respond? Arch Dis Child. 2008 Dec;93(12):1071-4.
• French National Plan for rare Diseases 2005-2008. Ensuring equity in the access to diagnosis, treatment and provision of care. 2004. Available from: http://www.orpha.net/actor/EuropaNews/2006/doc/French_National_Plan.pdf
• Zurynski Y, Reeve K, Elliott E. International conferences on rare diseases: initiatives in commitment, patient care and connections. MJA 2007, 187(10):597 (Letter)
• Schiepatti A, Henter JI, Darina E, Aperia A. Why rare diseases are an important medical and social issue. Lancet 2008; 371:2039
• Zurynski YA, Peadon E, Bower C, Elliott EJ. Impacts of national surveillance for uncommon conditions in childhood. J Paed Child Health 2007; 43:724-731}

What does the Foundation consider funding?

The Foundation will consider funding the following:

• Medicines
   
• Treatment
   
• Equipment
   
• Items that Improve the quality of life for the applicant and their family