Privacy Policy
Effective Date: 18 May 2026
Last Updated: 18 May 2026
Introduction
Stichting PiCC United (“PiCC United”, “we”, “us”, or “our”) is an international, patient-led non-profit organisation legally established as a Dutch foundation (stichting) in The Hague, the Netherlands.
We are committed to protecting your privacy and handling your personal data transparently and securely in accordance with:
- The EU General Data Protection Regulation (GDPR) (Regulation (EU) 2016/679)
- The Dutch General Data Protection Regulation Implementation Act (Uitvoeringswet AVG)
- Other applicable privacy laws
This Privacy Policy explains how we collect, use, store, and protect your personal data when you visit our website, participate in our activities, sign up for newsletters, attend events, or collaborate with us.
Data Controller
The data controller responsible for processing your personal data is:
Stichting PiCC United
Alexanderveld 5
2585 DB The Hague
The Netherlands
KvK (Chamber of Commerce): 42059781
RSIN: 869524124
Email: hello@piccunited.org
Website: https://piccunited.org
Stichting PiCC United was incorporated on 13 May 2026 and is registered with the Netherlands Chamber of Commerce.
Contact Details
If you have questions about this Privacy Policy or wish to exercise your rights, please contact us:
Email: hello@piccunited.org
What Personal Data We Collect
We may collect the following categories of personal data:
Basic Identification Data
- Name
- Email address
- Telephone number
- Country of residence
- Organisation or affiliation
- Professional role
Community and Membership Data
- Areas of interest
- Skills and experience
- Participation history
- Learning progress
- Forum contributions
Project and Contract Data
- CVs and biographies
- Contracts and payment details
- Invoices and reimbursement information
- Tax information where legally required
Special Categories of Data
Because we work with patients and carers, we may process health-related information or other special categories of personal data, but only when:
- You provide explicit consent; or
- Another lawful basis under Article 9 GDPR applies.
Technical Data
- IP address
- Browser type and version
- Device information
- Pages visited
- Cookies and tracking data
How We Collect Data
We collect data when you:
- Visit our website
- Complete contact forms
- Subscribe to newsletters
- Register for webinars or events
- Apply to participate in projects
- Join our community
- Purchase products or services
- Contact us directly
- Participate in surveys or interviews
Legal Bases for Processing
We process personal data based on one or more of the following legal bases:
Consent
For example:
- Newsletter subscriptions
- Optional profile information
- Health-related data
Contractual Necessity
To:
- Deliver services
- Process reimbursements
- Manage contracts
Legal Obligation
To comply with:
- Accounting requirements
- Tax laws
- Regulatory obligations
Legitimate Interests
To:
- Improve our services
- Maintain security
- Communicate with stakeholders
- Promote our mission
How We Use Your Data
We use your personal data to:
- Operate our website and community
- Deliver educational resources and events
- Recruit participants for projects
- Manage contracts and payments
- Communicate with members and partners
- Process donations and sponsorships
- Improve our services
- Meet legal obligations
Sharing Your Personal Data
We may share your data with trusted service providers, including:
- Hosting and IT providers
- Payment processors
- Email and newsletter providers
- Event and webinar platforms
- Learning management systems
- Professional advisers
- Public authorities where legally required
Examples of systems we may use include:
- WordPress
- Elementor
- MailPoet
- Gravity Forms
- LearnDash
- Microsoft 365
- Usercentrics Cookiebot
- YouTube
All third parties are subject to appropriate contractual safeguards where required.
International Data Transfers
Your personal data is primarily processed within the European Economic Area (EEA).
Where data is transferred outside the EEA, we ensure appropriate safeguards are in place, including:
- European Commission Standard Contractual Clauses
- Adequacy decisions
- Other lawful transfer mechanisms
Data Retention
We retain personal data only for as long as necessary.
Typical retention periods include:
Data Type | Retention Period |
Contact enquiries | Up to 24 months |
Newsletter subscriptions | Until you unsubscribe |
Project documentation | Up to 7 years |
Financial records | 7 years |
Website analytics | Up to 26 months |
Safeguarding records | As required by law and policy |
Cookies and Tracking Technologies
We use cookies and similar technologies to:
- Ensure website functionality
- Analyse traffic
- Improve user experience
- Manage consent preferences
We use Usercentrics Cookiebot to manage cookie consent.
Please see our Cookie Policy for more information.
Your Rights Under GDPR
We use cookies and similar technologies to:
- Ensure website functionality
- Analyse traffic
- Improve user experience
- Manage consent preferences
We use Usercentrics Cookiebot to manage cookie consent.
Please see our Cookie Policy for more information.
Complaints
If you believe we have not handled your data appropriately, you may contact:
Autoriteit Persoonsgegevens
https://autoriteitpersoonsgegevens.nl/en
Security Measures
We implement appropriate technical and organisational measures to protect your data, including:
- Secure hosting
- Encryption where appropriate
- Access controls
- Audit logging
- Data processing agreements with suppliers
Safeguarding and Sensitive Information
PiCC United is committed to safeguarding participants and handling sensitive information responsibly.
Where safeguarding concerns arise, relevant information may be processed and shared where necessary to protect individuals and comply with legal obligations.
Third-Party Links
Our website may contain links to third-party websites. We are not responsible for their privacy practices.
Children
Our services are generally intended for adults. We do not knowingly collect personal data from children without appropriate consent.
Automated Decision-Making
We do not make decisions based solely on automated processing that produce legal or similarly significant effects.
Changes to This Privacy Policy
We may update this Privacy Policy periodically.
The latest version will always be available at:
Related Policies
Governing Law
This Privacy Policy is governed by Dutch law.