Security and privacy

Our team values your privacy

No name or personal details are required, handled or stored.

Hospital Grade Security

Our team has more than 10 years of experience in developing hospital-grade software and data management systems that leverage modern, secure web frameworks.

Your information is fully encrypted, both in transit and at rest using industry-standard SSL certificates and data encryption mechanisms (e.g., AES 256).

You’re in control

You control who sees your data, and what they can use it for. You can choose to share data with other people living with similar conditions,  family members, and with researchers worldwide.

For science, not sales

Unlike digital and social media platforms, the goal of this effort is to advance science to benefit all people living with rare conditions. We do not market products or services and your contact information will never be shared with third parties.