About XLH Australia Inc

About us

XLH Australia Incorporated (Inc) began in 2018 as a patient support and advocacy group. We work to raise awareness of XLH (X-Linked Hypophosphatemia) and provide education for families, carers, health professionals, and the wider Australian community.

XLH Australia is the first patient-led group in the country dedicated to X-Linked Hypophosphatemia. We connect families, carers, and health professionals, raise awareness, and push for better care and treatment. Our volunteers—many living with or caring for someone with XLH—work together to empower the community and drive change.

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. 

Additionally, we work with medical practitioners and government departments to advocate for new and improved treatments on behalf of our XLH community. 

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:

• We base all partnerships on integrity and openness. Partnerships must support XLH Australia’s mission and bring clear benefits to our community.
• Every joint activity must align with our mission and strategic goals. No partnership will compromise XLH Australia’s independence.
• We protect our editorial independence so we can speak freely—whether our comments are positive or critical.
• We welcome opportunities to raise awareness through cause-related marketing and sponsorship. However, we do not endorse third parties, their products, or their services.
  We work with pharmaceutical companies to share knowledge and expertise. This may include attending meetings, training sessions, advisory boards, or market research events.
• We will not partner with any company whose products or services harm people with XLH or related conditions, or whose claims of benefit lack evidence.
• Partnerships with pharmaceutical companies will never compromise our independence.
  We only accept support for activities that fit our objectives. We will not join projects or accept funding if a company requires us to promote a specific drug.
• At times, we may campaign for fair access to treatments. We will never accept pharmaceutical funding to support these campaigns. If we campaign for access to a drug made by a company that has funded us for other projects, we will declare that funding to regulators and make clear that it does not influence our decision to campaign.
  
  

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