Privacy Policy
National MSA Research
Rare Neurological Disease Research Ltd
ABN: 55 681 229 032
1. Our Commitment to Privacy
National MSA Research is committed to respecting and protecting the privacy of individuals who engage with our organisation.
We recognise the importance of handling personal information responsibly, particularly when communicating with donors, volunteers, event participants, supporters, healthcare professionals and members of the Multiple System Atrophy (MSA) community.
This Privacy Policy explains how we collect, use, store and disclose personal information and how individuals can contact us about privacy matters.
We aim to manage personal information in accordance with applicable Australian privacy laws, including the Privacy Act 1988 (Cth) and Australian Privacy Principles where applicable.
2. Information We May Collect
Depending on how you interact with National MSA Research, we may collect:
- Your name and contact details, including your email address, telephone number and postal address.
- Information supplied through website enquiries and contact forms.
- Donation amounts, transaction references and information required for receipts.
- Fundraising registrations and event participation information.
- Volunteer applications, skills and availability information.
- Newsletter subscription preferences.
- Sponsorship and organisational contact details.
- Information you voluntarily provide when communicating with our organisation.
- Technical information associated with website visits, such as IP addresses, browser details and website usage information.
Some individuals may choose to share personal experiences relating to MSA or other health matters.
We recognise that health information is sensitive and requires particular care. We ask visitors not to submit medical records or confidential patient information through general website forms unless specifically requested through an appropriate authorised process.
3. How We Collect Personal Information
We may collect information when you:
- Contact National MSA Research.
- Submit an enquiry through our website.
- Make a donation or participate in fundraising.
- Register for an event or activity.
- Apply to volunteer or become an Ambassador.
- Subscribe to our newsletter.
- Enquire about partnerships or sponsorship.
- Provide information directly to an authorised representative.
We may also receive limited information from third-party platforms used to deliver our services.
Where practical and appropriate, individuals may make general enquiries without providing identifying information.
4. How We Use Your Information
Personal information may be used to:
- Respond to enquiries and requests.
- Process donations and issue receipts.
- Manage fundraising events and activities.
- Communicate with supporters and volunteers.
- Coordinate volunteer participation and onboarding.
- Manage partnerships and sponsorship enquiries.
- Send newsletters and updates where permitted.
- Maintain appropriate organisational and financial records.
- Improve website functionality and services.
- Meet legal, regulatory and reporting obligations.
We will seek to use personal information only for appropriate purposes connected with our activities or otherwise as permitted or required by law.
5. Donations and Payment Processing
National MSA Research uses third-party payment services to facilitate approved online donations and transactions.
These services may include Stripe and other payment providers made available through our website.
When making an online payment, information may be collected and processed by the relevant payment provider according to its privacy and security arrangements.
National MSA Research may receive transaction information, payment status, contact details and other records necessary to administer donations, maintain financial records and issue receipts.
We do not ask donors to send payment card details through ordinary email or general contact forms.
6. Website Forms and Communications
Our website may use third-party services to manage enquiries, forms and communications.
These include Jotform for online forms and MailerLite for newsletter subscriptions, where those services are enabled.
Information submitted through these services may be processed and stored in accordance with their applicable privacy arrangements.
If you subscribe to our newsletter, you can unsubscribe using the instructions provided in the communication or by contacting us directly.
7. Sharing and Disclosure of Information
National MSA Research may disclose personal information to authorised service providers where reasonably necessary to deliver our activities.
These may include payment processors, website hosting providers, communication services, form providers, event services and authorised technology providers.
We may also disclose information where required or authorised by law, or with your consent.
We do not sell our supporter or donor contact lists.
Access to personal information within our organisation is intended to be limited to authorised individuals with a legitimate operational purpose.
8. Overseas Processing of Information
Some third-party technology and service providers may process, store or access information outside Australia.
The overseas locations and applicable service arrangements will depend on the providers used by National MSA Research.
[Before publication: confirm whether overseas disclosures are likely and identify relevant countries where practicable.]
9. Cookies and Website Analytics
Our website may use cookies and similar technologies to support website functionality, security and usage analysis.
Cookies are small data files that websites may store on your device.
We may use website analytics tools to understand how visitors interact with the website and identify areas for improvement.
You can manage or restrict cookies through your browser settings. Disabling some cookies may affect website functionality.
Any additional tracking or analytics services enabled on the website will be reviewed as part of our privacy arrangements.
10. Information Security
We recognise the importance of protecting personal information against loss, misuse, unauthorised access and disclosure.
National MSA Research aims to apply reasonable technical and organisational safeguards appropriate to the information being handled.
These may include secure website connections, access controls, account permissions and appropriate administrative procedures.
No internet-based service can guarantee absolute security. We review security arrangements as our systems and services develop.
11. Storage and Retention
Personal information is retained for as long as reasonably necessary for the purposes for which it was collected, including applicable legal, financial, administrative and recordkeeping requirements.
Where information is no longer required and no legal obligation requires its retention, we aim to securely delete, destroy or de-identify it as appropriate.
12. Accessing or Correcting Your Information
You may contact National MSA Research to request access to personal information we hold about you or to ask us to correct information that is inaccurate or outdated.
Requests will be assessed in accordance with applicable law. We may need to verify your identity before releasing or updating personal information.
To make a request, contact:
Email: info@nationalmsaresearch.org.au
Subject: Privacy Enquiry
13. Privacy Concerns and Complaints
If you have concerns about how National MSA Research has handled your personal information, please contact us using the details above.
We will review your enquiry or complaint, investigate the relevant circumstances and respond within a reasonable period.
If your concern is not resolved, you may be able to contact the Office of the Australian Information Commissioner (OAIC), depending on the circumstances and applicable law.
More information is available at www.oaic.gov.au.
14. External Websites
Our website may include links to external organisations, research institutions, payment platforms and other services.
National MSA Research is not responsible for the privacy practices of websites operated independently of our organisation.
We encourage visitors to review the privacy policies of external websites before providing personal information.
15. Updates to This Policy
We may update this Privacy Policy to reflect changes in our operations, website functionality, technology services or legal requirements.
The current approved version will be made available through our website.
16. Contact Us
For privacy enquiries, requests or concerns, 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
Last updated: [Insert approval date]