About us
XLH Australia Incorporated (Inc) is a patient support and advocacy group that was founded in 2018. Our mission is to promote XLH awareness and education for affected families, carers, medical professionals, and broader Australian community.
Our patient support and advocacy group is operated by a dedicated group of volunteers from across Australia. Our volunteers have been diagnosed with, or are caring for someone with, XLH (X-Linked Hypophosphatemia). We are the first patient support and advocacy group in Australia that is specifically dedicated to improving the standards of care and treatments for people with XLH.
The work we do
We work hard to support our members and advocate for patients living with this rare condition and take part in a number of events and activities in the community. XLH Australia provides patients with useful information to help guide them through their XLH journey.
To achieve this, XLH Australia Inc works closely with Rare Voices Australia and the International XLH Alliance.
We also work with medical practitioners and government departments to advocate for new and improved treatments on behalf of our XLH community.
To learn more about XLH you can watch this short video for a brief explanation or read more about patient experiences in this booklet.
Partnerships
XLH Australia works with pharmaceutical companies to achieve its goals. This enables us to achieve our mission without compromising our integrity. We don’t allow our work with pharmaceutical firms to affect our ability to offer independent and unbiased patient information.
We know that working with pharmaceutical companies that manufacture and market drugs and treatments gives XLH Australia important knowledge and expertise. These companies are also willing to sponsor and fund certain activities undertaken by XLH Australia. However, pharmaceutical companies and medical device companies are not charitable organisations and we take care in how we work with them.
Below are the principles we adhere to:
- All partnerships will be based on the principles of integrity and openness and will bring benefit to XLH Australia through supporting XLH Australia to achieve its mission.
- Any joint activity must be fit within XLH Australia’s mission and strategic aims. Any partnership will not compromise the independent status of XLH Australia.
- We will ensure that our editorial independence is maintained so that we are free to comment both positively and negatively.
- We welcome opportunities to raise awareness through cause related marketing and sponsorship. However, we will not directly endorse any third party, its products or services.
- XLH Australia will work with members of the pharmaceutical industry to share knowledge and expertise. This may involve the participation in pharmaceutical industry organised events such as: private or public meetings; training events; advisory board meetings; and market research events.
- No commercial partnership will be entered into with a company whose product or service is considered to be detrimental to people living with x-linked hypophosphataemia or related disorders, or any product or service with unsupported claims of positive benefits to those with x-linked hypophosphataemia or related disorders.
- Partnerships with pharmaceutical companies will not compromise XLH Australia’s independent status.
- XLH Australia will not accept support for activities which lie outside our objectives. XLH Australia will not undertake any joint work with, or accept funding from a pharmaceutical company where promotion of a specific drug is required or demanded by the company (either explicitly or implicitly).
- There may be occasions where we will campaign for equitable access to a treatment. Under no circumstances will we accept funding from pharmaceutical companies to support campaigning activity for access to specific treatments. In the instance of campaigning for access to a drug made by a company that XLH Australia has received funding from currently or in the past for separate projects, we will ensure that all funding is declared as requested on official documentation provided to regulators, and make clear that funding for separate projects has no impact on whether we campaign for access to a specific treatment or not.