Our mission is to connect with and empower all FAers worldwide, and enable their meaningful participation in finding a cure for FA.

By participating actively and promptly in clinical and virtual trials listed in the Research section of The FA App, you can help Power the Cure. The quicker FA researchers have access to the data they need, the quicker the science progresses. No matter where you live, you can be a powerful part of research – and every data point matters.

The FA App will continue to develop and change as the community has new ideas and the researchers share their needs. Everything will be done in service of our mission.

The FA App was designed by members of the FA community for the FA community.

We recognize that each FA community member has their own journey with FA. Data contribution is voluntary. We are open about what data is contributed, how the data is used, and intend to share the outcomes of any published research following the use of The FA App. The FA App was designed around high security standards and is tested by an external security testing organization for additional robustness. Data is processed and secured in line with US and EU laws on data protection.

If you wish to request the deletion of your data from The FA App, please visit our Account Deletion Request Page and provide your registered email address. We will process your request promptly. Your privacy is important to us, and we are here to assist you with any concerns.

No. We are structurally not-for-profit and have no intent to monetise anything. There will be no profits generated for anyone, ever. There is no intent to fund-raise via The FA App.