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Grants for Children and Young Adults with Rare Diseases (Australia)

AMGEN Prize: Innovation for Patients with Rare Diseases

Deadline: 31-Mar-2026

The Steve Waugh Foundation provides financial support to Australian children and young adults aged 0–25 living with rare diseases who cannot access funding from other sources. The Foundation funds essential equipment, therapy, mobility aids, communication devices, and minor home modifications that directly improve quality of life. Applicants must meet strict eligibility criteria, including confirmed rare disease diagnosis, Medicare eligibility, and prior application to government funding programs such as the NDIS.

About the Steve Waugh Foundation

The Steve Waugh Foundation is an Australian charitable organisation dedicated to supporting children and young adults living with rare diseases.

Its core mission is to assist individuals with the rarest medical conditions who are ineligible for financial assistance from other organisations or funding programs.

The Foundation prioritises practical, essential support that directly improves quality of life.

What Is Considered a Rare Disease?

For eligibility under this program, a rare disease must:

The diagnosis must be formal and documented.

A medical specialist is defined as a doctor qualified in a medical specialty. General practitioners (GPs) and allied health professionals are not considered specialists for eligibility purposes.

Who Is Eligible?

Applicants must meet all of the following criteria.

Age Requirement

Residency and Citizenship

Medicare Requirement

Diagnosis Requirement

Government Funding Requirement

Applicants must have already applied for government funding assistance for the requested item, such as through:

Applicants must provide documented evidence showing:

The Foundation is a funding source of last resort.

What the Foundation Funds

The Foundation considers funding for essential items and services that directly improve quality of life.

Eligible support may include:

All approved funding must be used within 12 months of the grant approval date.

What the Foundation Does NOT Fund

The Foundation does not provide assistance for:

Applications requesting these items will not be approved.

Financial and Supplier Requirements

To be eligible:

Budget accuracy is critical. The Foundation will not cover cost increases or new items after approval.

Required Documentation

Applicants must submit comprehensive documentation.

Personal and Medical Documents

Financial Documents

Funding Disclosure Requirements

Applicants must:

Transparency is mandatory.

Why This Foundation Matters

1. Focus on the Rarest Diseases

Rare diseases often fall outside mainstream funding programs. The Foundation specifically targets those who cannot access other support systems.

2. Funding as a Last Resort

By requiring prior application to government schemes like NDIS, the Foundation ensures it supports families with genuine unmet needs.

3. Quality-of-Life Impact

The funding prioritises practical, essential improvements that increase independence, communication, and mobility.

4. Strict Governance and Accountability

Clear documentation, supplier rules, and eligibility standards ensure responsible use of charitable funds.

How to Apply

Follow these structured steps.

Step 1: Confirm Eligibility

Ensure:

Step 2: Apply for Government Assistance First

Submit application through appropriate programs such as NDIS.

Obtain documented evidence of:

Step 3: Gather Required Documentation

Prepare:

Step 4: Submit Complete Application

Ensure all documentation is accurate and complete.

Incomplete applications may delay processing or result in rejection.

Step 5: Use Funds Within 12 Months

If approved:

Common Mistakes to Avoid

Careful compliance increases approval chances.

Frequently Asked Questions (FAQs)

1. Who can apply to the Steve Waugh Foundation?

Children and young adults aged 0–25 in Australia with a formally diagnosed rare disease who meet residency and Medicare requirements.

2. What qualifies as a rare disease?

A disease with a prevalence of at least 2:100,000, recognised on ORPHANET or confirmed as rare by a medical specialist.

3. Is prior government funding application required?

Yes. Applicants must first apply to programs such as NDIS and provide evidence of approval or decline.

4. Does the Foundation fund vehicles or home renovations?

No. Vehicles and major home renovations are excluded from funding.

5. Are therapy and mobility aids covered?

Yes. Equipment, therapy, mobility aids, and communication devices may be funded if they directly improve quality of life.

6. How long do recipients have to use approved funds?

Funds must be used within 12 months of approval.

7. Can additional costs be added after approval?

No. Any costs not included in the original application cannot be funded later.

Conclusion

The Steve Waugh Foundation provides targeted, last-resort financial assistance to Australian children and young adults living with rare diseases. By focusing on essential quality-of-life improvements and enforcing strict eligibility standards, the Foundation ensures its support reaches families with the greatest unmet needs.

Applicants must carefully review eligibility criteria, apply for government funding first, prepare complete documentation, and ensure all requested items comply with funding rules. Proper preparation and compliance are essential for a successful application.

For more information, visit Steve Waugh Foundation.

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