This page explains, in plain language, what personal data we process in Pompe Journey Navigator, what we use it for, and what rights you have over it.
Fundación de Neurociencias
Tax ID (CIF): G74177643
Registration number: 1183SND
Contact: admin@fneurociencias.org
Institutional website: https://fneurociencias.org
Your account data
To create your account and let you sign in, we store your email address and, if you provide it, your name. This information is managed through Supabase, the provider that supports the platform's authentication and database.
Health tracking data
If you choose to use the tracking module, you can voluntarily log data about your symptoms and infusions. This is a special category of data under Article 9 of the GDPR (health data), and we only process it if you have given your explicit consent beforehand, separately from any other consent; without it, the platform does not allow any such record to be saved. You can withdraw your consent at any time from your personal area.
Record of your consent
We keep a record of when you accepted the processing of your data (and, if you withdraw it, when you did so), as evidence that consent was given in line with the GDPR.
The legal basis for these processing activities is your consent (Article 6.1.a of the GDPR and, for health data, Article 9.2.a). You can withdraw it at any time without affecting the lawfulness of processing carried out before the withdrawal.
We use your data to give you access to your account, to provide the platform's informational support, and, if you activate it, your personal symptom and infusion tracking. We do not use your data for commercial or advertising purposes.
We keep your data for as long as you maintain an active account on the platform. You can request its deletion at any time; see "Your rights" below for how.
The clinical trials search tool is a service provided by an external provider. It only connects to that provider when you explicitly click to display it; until then, none of your data is shared with it.
The platform relies on infrastructure providers for application and database hosting (currently Vercel and Supabase), which act as data processors and only process data on our instructions.
We do not sell your data or share it with third parties for commercial or advertising purposes.
At any time you can exercise the following rights over your data:
How to exercise them
From the "My data and privacy" section of your personal area you can download your data and withdraw your consent directly. For any other request, including full account deletion, write to us at admin@fneurociencias.org.
If you believe your data is not being processed in line with the regulations, you can file a complaint with the Spanish Data Protection Agency (Agencia Espanola de Proteccion de Datos, www.aepd.es).
Last reviewed: July 2026