Here are two key policies that govern how we work.
This policy was last updated on 15 September 2021. This Policy is reviewed regularly. We invite your comments by email to [email protected].
TSA’s vision is that together we can create a better life and more hopeful future for every individual living with TSC. We want to live in a world where every person affected by Tuberous Sclerosis Complex (TSC) is empowered by the best treatment, information and support.
Collaboration between TSA and pharmaceutical companies may deliver significant benefits for our TSA members enhancing current and potential development of new treatments to produce better health outcomes. TSA has an important role to play in increasing TSC research and development capacity in Australia. TSA recognises that relationships with pharmaceutical companies should be subject to clear guidelines to ensure openness, independence, transparency and impartiality.
Pharmaceutical companies are also sometimes willing to sponsor and fund certain activities we undertake. Pharmaceutical companies are not charitable organisations and have different interests and objectives from TSA’s. We acknowledge that in many cases, when we work with pharmaceutical companies the partnership is not equal, in that the pharmaceutical company has many more resources at its disposal than TSA. For these reasons, we take particular care in how our organisation works with pharmaceutical companies and other for-profit health care providers.
We also acknowledge that, because there are a limited number of treatments for TSC, there are a limited number of pharmaceutical companies with an interest in TSC. TSA is also committed to supporting research that leads to new treatments for TSC.
The purpose of this Policy is to provide clear principles and guidance about how TSA works with pharmaceutical companies to achieve our objectives, without compromising our integrity and our ability to support our members. Adherence to this Policy will ensure that our activities are not in any way influenced by the commercial interests of any for-profit companies we work with.
The TSA Committee will review this policy every two years.
- TSA will independently set its own priorities, policies and plans.
- TSA is committed to total transparency in all dealings with pharmaceutical companies.
- TSA will not endorse individual pharmaceutical products or suppliers of health care services.
- TSA will seek to develop relationships with multiple pharmaceutical companies, so as not to develop a special relationship with only one company.
- TSA will engage in dialogue with pharmaceutical companies about TSC treatments.
1. Openness and Transparency
a. This Policy will be published on the TSA website.
b. A full list of donations and grants received from pharmaceutical companies will be published in the annual report of TSA in the year in which the money is received.
c. TSA will acknowledge financial support for projects with a statement similar to “This project was funded by a grant from <company name>.”
2. Funding of Projects
a. All relationships with pharmaceutical companies will be documented in writing. The agreed roles and responsibilities will be clearly defined for all parties.
b. TSA will only encourage funding for projects that have been identified as priorities in the regular TSA planning process. These will be projects that align with TSA’s mission and objectives. Funded projects that are not research trials and are initiated by a pharmaceutical company will need to be approved by the TSA Committee before they proceed. TSA will not accept support from any pharmaceutical company that is attempting to influence its policy or direction for commercial advantage.
c. Funding will only be accepted from pharmaceutical companies where the project has a fixed timeframe and outcome. Funding will not be accepted for ongoing costs of operating TSA.
a. TSA will not endorse any specific drug or treatment. Where possible, when discussing treatments, TSA will refer to a class of drugs (eg “mTOR inhibitors”) rather than a specific drug or brand name.
b. TSA will not accept or distribute promotional products provided by a pharmaceutical company and will not allow distribution of such products at TSA events.
a. TSA will keep its key staff and volunteers informed on TSC research, the drug development process and the way the pharmaceutical industry operates.
b. TSA will work with other members of TSC International and learn from their experiences of working with pharmaceutical companies.
c. TSA will seek ensure that all medical information it publishes is reviewed by the TSA medical advisors, who are independent clinicians.
5. Representing Families affected by TSC
a. TSA understands that in its role as representing the families affected by TSC in Australia that it may be asked to review patient information material to ensure that it has validity and understanding for its audience. TSA will not accept any fee for this service. TSA representatives may, however, be reimbursed for any out of pocket expenses associated with this activity.
a. The TSA Committee will review any offer of hospitality, including travel and accommodation that is provided or funded by a pharmaceutical company.
b. The TSA logo and name cannot be used by any pharmaceutical company to promote a product.
This policy was last updated on 2 July 2022. This Policy is reviewed regularly. We invite your comments by email to [email protected].
The personal information we hold
- We hold contact information for the members of Tuberous Sclerosis Australia (TSA), members of the TSC Health Professionals Network, people who contact our Nurse, information and support services, people who attend TSA events and people who make a donation to TSA, suppliers and vendors to TSA, other TSC health professionals,
- We hold financial information for people who make a donation to TSA.
- We hold sensitive health information for members of TSA and people who contact our Nurse, information and support services.
With respects to the items above, we may specifically collect the following types of personal information:
- mailing or street address;
- email address;
- telephone number and other contact details;
- age or date of birth;
- credit card information;
- your device ID, device type, geo-location information, computer and connection information, statistics on page views, traffic to and from the sites, ad data, IP address and standard web log information;
- details of the products and services we have provided to you or that you have enquired about, including any additional information necessary to deliver those products and services and respond to your enquiries;
- any additional information relating to you that you provide to us directly through our website or app or indirectly through your use of our website or app or online presence or through other websites or accounts from which you permit us to collect information;
- information you provide to us through customer surveys; or
- any other personal information that may be required in order to facilitate your dealings with us.
Why we collect personal information
We may collect, hold, use and disclose your personal information (which may include financial information and sensitive health information) for the following purposes:
- to enable you to access and use our services either face-to-face or online. This includes sending information by post, email, via website or third party software applications (such as teleconferencing software) or where we connect people with TSC to health professionals and holding educational events.
- to support our fundraising. We contact previous donors and fundraisers to give them information about our organisation and the people we help and to ask for their ongoing support.
- to allow us to process financial transactions including one-off and recurring donations, membership fees and event registration fees.
- to allow us to provide our information and support services and to tailor information and our services to the needs of our members and others who contact us.
- to send you service, support and administrative messages, reminders, technical notices, updates, security alerts, and information requested by you;
- to send you marketing and promotional messages and other information that may be of interest to you, including information sent by, or on behalf of, our business partners that we think you may find interesting;
- to administer rewards, surveys, contests, or other promotional activities or events sponsored or managed by us or our business partners;
- to comply with our legal obligations, resolve any disputes that we may have with any of our users, and enforce our agreements with third parties; and
- to consider your employment application.
What happens if you do not provide us with personal information
- When communicating with TSA you have the option of not identifying yourself or using a pseudonym to maintain anonymity to the extent that it is still practical for us to provide you with services and/or information in a meaningful way. We will provide information and support about TSC to you as best we can with as little personal information as you are willing to provide.
- We require personal information for all TSA members. You will not be able to become a member of TSA without providing personal information.
- We are able to receive anonymous donations. You will be able to make a donation to TSA without providing personal information.
- Due to regulations, we require personal information about all individuals and organisations who fundraise for TSA. We will not be able to authorise a fundraiser without collecting personal information.
How we collect and hold this information
- We may collect information by paper form, on our website, by telephone or email or via third party organisations we are partnered with or whose services we use (for example Software As A Service) providers
- All personal and sensitive information is held in our online database, secured by passwords and encryption.
- From time to time it may be held in printed or electronic files for use by our staff, volunteers and suppliers. These are destroyed when they are no longer required to carry out our work.
- Financial information is destroyed when the related financial transactions have been processed.
When we share this information
- The information is used by TSA staff and volunteers. Our volunteers include the TSA committee, regional contacts and others that help us with our work.
- We may share personal information about members of the TSC Health Professionals Network with people with TSC seeking a health professional in their area or other TSC Health Professionals.
- We share contact information with our suppliers. For example, our mailing list is provided to our printer when they send printed information (such as our magazine) in the post. If we share personal information with individuals or organisations outside Australia we will ensure these organisations offer very similar protections as the Australian privacy regulations.
- We share financial information only for the purposes of processing financial transactions.
- We never share individual sensitive health information unless it is for research purposes and this has been explicitly agreed to by you. We may use sensitive health information to provide aggregated, deidentified information for research and advocacy purposes. For example, we may share the number of people living with TSC in a particular area or in a particular age range.
How we use photographs and videos
TSA may hold and use photographs and or videos of you if:
- You have attended a TSA organised event
- You have submitted photos or videos to us eg to tell part of your TSC story
We will always seek permission to take photographs or videos of you where it is practicable to do so. You can revoke this permission or tell us you do not want us to use an image/video at any time. If you revoke permission or tell us you do not want us to use an image/video we will take reasonable steps to remove this content from any online publications and exclude this content from all future printed and online publications.
How you can access your information and seek correction
You can request a copy of your information at any time. Please contact:
Tuberous Sclerosis Australia
Sometimes, we may not be able to provide you with access to all of your personal information and, where this is the case, we will tell you why. We may also need to verify your identity when you request your personal information.
If you think that any personal information we hold about you is inaccurate, please contact us and we will take reasonable steps to ensure that it is corrected.
How we handle your feedback and complaints
If you think we have breached the Privacy Act, or you wish to make a complaint about the way we have handled your personal information, you can contact us in writing to the address or email above. Please include your name, email address and/or telephone number and clearly describe your complaint. We will acknowledge your complaint and respond to you regarding your complaint within a reasonable period of time. If you think that we have failed to resolve the complaint satisfactorily, we will provide you with information about the further steps you can take, for example escalating the complaint to the Office of the Australian Information Commissioner. See www.oaic.gov.au.
Jackie Gambrell, CEO
c/o 18 Central Road, Beverly Hills, NSW 2209, Australia
Effective: 31 July 2021