Governance & Policies

Our Organisation

National MSA Research operates through Rare Neurological Disease Research Ltd, an Australian registered charity.

Legal entity: Rare Neurological Disease Research Ltd

Trading name: National MSA Research

ABN: 55 681 229 032

ACN: 681 229 032

We operate as a not-for-profit organisation, with our charitable activities directed towards the purposes set out in our Constitution.

Our Governance Structure

National MSA Research is governed by a Board of Directors responsible for overseeing the organisation’s strategic direction, financial affairs and charitable activities.

The Board is responsible for ensuring that decisions are made in the interests of the organisation and in accordance with applicable legal and regulatory obligations.

Our Directors contribute professional experience, knowledge and time towards supporting the charity’s mission.

Where appropriate, the Board also draws on advice from appointed medical, research and other professional advisors.

Advisors provide specialist perspectives, while organisational governance and decision-making remain the responsibility of the Board.

Our Constitution

The Constitution is a foundational governance document for Rare Neurological Disease Research Ltd.

It establishes the organisation’s charitable purposes, governance arrangements and key rules relating to its operation.

Our charitable objectives include raising awareness of MSA, encouraging medical understanding and supporting or facilitating appropriate scientific research.

The Constitution also provides for the responsibilities and operation of the organisation’s governing body.

An approved public copy may be made available through this page.

Ethical Conduct

National MSA Research values integrity, honesty, respect and accountability.

We expect individuals representing our organisation to act responsibly and to respect the people and communities we serve.

Our governance framework includes consideration of ethical conduct, appropriate decision-making and responsible management of organisational responsibilities.

We recognise that ethical behaviour is fundamental to maintaining the trust of donors, volunteers, partners and the wider community.

Conflicts of Interest

Potential conflicts of interest can arise when an individual’s personal, professional or financial interests overlap with their responsibilities to an organisation.

National MSA Research recognises the importance of identifying, disclosing and appropriately managing actual, potential and perceived conflicts of interest.

This helps protect the integrity of decisions relating to fundraising, expenditure, partnerships, research support and other charitable activities.

Our governance documents include provisions addressing conflicts of interest.

Financial Accountability

National MSA Research recognises its responsibility to manage charitable funds appropriately.

The Board provides oversight of financial decisions and the organisation’s financial affairs.

We aim to maintain accurate records of income, expenditure, donations and relevant charitable fund allocations.

Financial reporting and the publication of financial information are subject to verification, applicable requirements and appropriate organisational approval.

Privacy and Information Protection

National MSA Research recognises the importance of protecting personal information provided by supporters, volunteers, donors and other individuals.

We aim to handle personal information responsibly and in accordance with applicable Australian privacy requirements.

Health information and other sensitive information require particular care.

Our website Privacy Policy provides further information about the collection, use and management of personal information.

Internal procedures and information-handling arrangements are reviewed as the organisation’s activities and systems develop.

Respectful and Safe Participation

We believe everyone involved with National MSA Research should be treated with dignity and respect.

Our organisational policy documents address expectations concerning appropriate conduct, including bullying and unacceptable behaviour.

We aim to encourage an environment where directors, volunteers, advisors and other participants can contribute safely and respectfully.

Where activities involve children, vulnerable people or other specific safeguarding requirements, appropriate legal and organisational obligations must be considered.

Raising Concerns and Reporting Misconduct

National MSA Research recognises the importance of enabling concerns about inappropriate conduct, potential misconduct or organisational activities to be raised.

Our policy records include whistleblower and ethical reporting provisions.

We aim to ensure that concerns are considered appropriately and handled in accordance with applicable requirements.

The appropriate reporting process may depend on the nature of the concern, including whether it involves a general complaint, a privacy matter or a disclosure eligible for whistleblower protection.

Details of approved reporting arrangements will be made available through the appropriate organisational channels.

Research Governance

Research is central to National MSA Research’s charitable objectives.

We recognise the importance of scientific integrity, appropriate assessment, responsible funding decisions and compliance with relevant research ethics requirements.

Any research funding commitment must be considered through the organisation’s applicable governance and approval arrangements.

Research involving human participants or sensitive health information may also require approvals from the responsible research institution or ethics committee.

National MSA Research does not regard an advisory relationship or expression of research interest as automatic approval of a project.

Our Policies and Documents

National MSA Research maintains organisational documents addressing governance and conduct.

Documents identified for review and potential public publication include:

• Constitution
• Code of Ethics and Conduct
• Conflict of Interest Policy
• Whistleblower Policy
• Anti-Bullying Policy
• Privacy Policy

Only current versions authorised for public release will be made available for download.

Some governance and operational documents may remain internal because they contain confidential information, security procedures or other material not intended for public distribution.

Policy Review and Updates

Good governance requires policies and procedures to remain appropriate as an organisation grows.

National MSA Research recognises the importance of reviewing documents to reflect organisational changes, legal requirements and operational needs.

Publicly available policies may be updated from time to time.

Where relevant, documents will identify their version, approval date or review information.

Our Commitment to the Community

National MSA Research exists to serve a charitable purpose and contribute towards the fight against Multiple System Atrophy.

We recognise the trust placed in our organisation by people living with MSA, their families, volunteers, donors and community supporters.

Through responsible leadership, ethical conduct and transparent governance, we aim to honour that trust.

Governance Enquiries

For general enquiries about the organisation’s governance or publicly available policies, please contact:

National MSA Research
Rare Neurological Disease Research Ltd
ABN: 55 681 229 032

Email: info@nationalmsaresearch.org.au
Website: www.nationalmsaresearch.org.au

Combatting MSA Together — With Integrity, Accountability and Respect.