Policy suite
Privacy notice
How Hope4PKD intends to collect, use, protect and respect personal information across public enquiries and the patient pathway.
Publication status: draft operational policy
This page records the intended controls. Hope4PKD’s legal and data protection reviewers must approve the responsible owner, dates and official organisation details before the policy takes effect.
01
Scope
This notice covers website enquiries, support requests, onboarding, case operations, donations and public-content consent. Hope4PKD must publish verified registration, controller and data protection officer contact details before processing begins.
02
Information collected
The initial support request is limited to identity and contact details, state, relationship to the patient, broad diagnosis status, support need, a short summary and consent records. Medical records are collected only after protected onboarding is operational.
03
Purpose and lawful basis
Information is used to review requests, manage consent, verify cases, coordinate approved support, prevent abuse, meet legal obligations and send safe service messages. A final lawful-basis schedule requires data protection and legal approval.
04
Access and sharing
Access follows staff role and case assignment. Healthcare, payment, email, hosting, scanning and other vendors may process limited data only under approved contracts and data-processing terms. Public campaign data comes from a separate record approved through consent.
05
Retention and rights
Hope4PKD will honour applicable access, correction, deletion, restriction, objection and consent-withdrawal rights. The retention schedule, request contact and approved cross-border safeguards must be published before launch.
Issued by Hope for Polycystic Kidney Disease Patients Initiative, operating as Hope4PKD Patients Initiative.