Privacy & Security
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How do you protect user privacy when tracking symptoms?
- RG users enter their own symptoms manually or scroll through a database of symptoms.
- RG does not allow connections with outside hospitals or health portals to protect patient privacy.
How do you protect user privacy’s when exploring users and diseases?
- RG does not collect phone numbers or IP addresses to collect exact location data. Our data comes from the city users voluntarily provide rather than tracking features that other apps and platforms use.
How do you protect user privacy in chat messages?
- Users match with each other directly on the app and only with accepted connections they have voluntarily made and not dismissed.
- Users can filter how they want to match with other users including matching on patients only, caregivers only, patients and caregivers, age ranges, matching categories, matching diseases, and matching symptoms.
How do you protect user privacy during the onboarding process?
- Users can select a private or public profile if they want to connect. Some rare disease users would like to share their profile publicly.
- RG uses a “biometric” feature so that users can use face recognition or touch id for further protection logging in.
- RareGuru asks for name, gender, diagnosis, symptoms and location for matching purposes only. We do not sell or export this data to third parties.
- Users connect with other users through recommendations based on diagnosis, symptoms and location but have the option to “dismiss” any recommended connections or others requesting to connect.
How do you protect the security of user data?
- We keep data securely in RG controlled databases, accessible only by a select group of vetted administrators
- Data access is secured by public/private keys and IAM policies through AWS.
- RG conforms to all GDPR policies and will remove all user information upon request.
- The RG infrastructure is maintained and managed by a local development firm with a well-defined security policy.
How are you planning to improve privacy within the app?
- End-to-end encryption of chat messages to ensure the privacy of all RG users
- Additional privacy options for filtering and accepting matches
- Additional user verification procedures, to weed out spam and troll accounts
- Additional reporting procedures to ensure that the RG community can identify and block users that do not meet the community guidelines
Can I report a user for inappropriate behavior?
- Users may block users on demand.
- Users may report users who do not meet the community guidelines.
