Last Updated: June 2026
The International Patient Power Network (IPPN) ("IPPN", "we", "our", or "us") is committed to protecting and respecting the privacy of all individuals who interact with our organisation, website, services, projects, events, and membership programmes.
This Privacy Policy explains how personal data is collected, used, stored, shared, and protected when visiting https://patient-power.net, becoming a member, participating in IPPN activities, attending events, subscribing to communications, or otherwise engaging with our organisation.
IPPN is an international non-profit organisation dedicated to empowering patients, caregivers, patient associations, healthcare professionals, researchers, and civil society partners through education, collaboration, advocacy support, digital resources, and international projects.
By using our website and services, users acknowledge that they have read and understood this Privacy Policy.
The data controller responsible for processing personal data collected through this website and related activities is:
International Patient Power Network (IPPN)
Website: https://patient-power.net
Email: connect@patient-power.net
Additional legal and registration details may be provided upon completion of organisational registration requirements.
This Privacy Policy applies to:
- Website visitors
- Individual members
- Representatives of member organisations
- Event participants
- Newsletter subscribers
- Volunteers
- Partners and collaborators
- Survey respondents
- Project participants
- Grant applicants
- Speakers and trainers
- Service users
This policy applies to all personal data processed through:
- The IPPN website
- Membership applications
- Contact forms
- Event registrations
- Surveys and research activities
- Educational programmes
- Digital platforms and online communities
- Email communications
- Social media interactions
- International projects and partnerships
Depending on the nature of the interaction, IPPN may collect the following categories of personal data.
- Full name
- Professional title
- Organisation name
- Membership category
- Country of residence
- Language preferences
- Email address
- Telephone number
- Postal address
- Social media profiles (if voluntarily provided)
- Membership applications
- Areas of interest
- Organisational profile information
- Participation history
- Volunteer activities
- Membership status
- Registration details
- Attendance records
- Workshop participation
- Certificates issued
- Event feedback
- IP address
- Browser type
- Device information
- Operating system
- Referring website
- Website usage information
- Cookies and similar technologies
- Contact form submissions
- Email correspondence
- Support requests
- Feedback and testimonials
IPPN may conduct surveys, studies, and research projects related to patient experiences, healthcare access, quality of life, health literacy, advocacy, and related topics.
Data collected may include:
- Survey responses
- Research participation information
- Opinions and experiences voluntarily shared
- Statistical and demographic information
Where research involves special categories of personal data, additional safeguards and consent mechanisms will be implemented.
Because IPPN operates in areas related to health, patient advocacy, and healthcare participation, certain activities may involve the processing of special categories of personal data under Article 9 GDPR.
Such data may include:
- Health-related information
- Disability-related information
- Accessibility requirements
- Dietary requirements for events
IPPN processes such information only when:
- Explicit consent has been obtained;
- Processing is necessary for event accessibility;
- Required by law;
- Necessary for legitimate non-profit activities permitted under GDPR.
We do not request health information through standard website forms unless necessary for a specific project, event, or service.
Personal data may be collected:
Directly from Users
When individuals:
- Apply for membership
- Subscribe to newsletters
- Register for events
- Download resources
- Complete surveys
- Contact us
- Participate in projects
- Submit applications
Automatically
Through:
- Website analytics
- Cookies
- Server logs
- Security monitoring tools
From Third Parties
Occasionally data may be received from:
- Partner organisations
- Event co-organisers
- Funding bodies
- Publicly available professional sources
IPPN processes personal data under one or more of the following legal bases:
Consent
For:
- Newsletter subscriptions
- Marketing communications
- Optional surveys
- Publication of testimonials
- Certain research activities
Contractual Necessity
For:
- Membership administration
- Event registration
- Service delivery
- Project participation
Legitimate Interests
For:
- Website administration
- Organisational development
- Network coordination
- Communication with members
- Fraud prevention
- Security monitoring
Legal Obligations
For:
- Financial record keeping
- Regulatory compliance
- Reporting obligations
IPPN may use personal data to:
- Process membership applications
- Manage memberships
- Deliver services and support
- Organise events and training programmes
- Provide educational resources
- Facilitate networking activities
- Conduct surveys and research
- Communicate organisational updates
- Improve website performance
- Respond to enquiries
- Evaluate programme effectiveness
- Prepare grant and project reports
- Meet legal and regulatory obligations
As an international network, IPPN operates across multiple countries and collaborates with organisations worldwide.
Personal data may be processed in connection with:
- International projects
- Cross-border events
- International partnerships
- Global educational programmes
- Research initiatives
- Networking activities
Whenever personal data is transferred internationally, appropriate safeguards will be implemented in accordance with GDPR requirements.
IPPN does not sell personal data.
Personal data may be shared with:
Service Providers
Including:
- Website hosting providers
- Email service providers
- Event management platforms
- Survey tools
- Cloud storage providers
- IT support providers
Project and Event Partners
Where necessary for:
- Event delivery
- Joint projects
- Collaborative initiatives
Regulatory Authorities
Where required by law.
All third-party processors are required to maintain appropriate security and confidentiality measures.
The website uses cookies and related technologies to:
- Ensure website functionality
- Improve user experience
- Analyse website performance
- Enhance security
Cookies may include:
- Essential cookies
- Analytics cookies
- Preference cookies
Users can manage cookie preferences through their browser settings or any cookie management tools implemented on the website.
A separate Cookie Policy may provide additional information.
Personal data is retained only for as long as necessary to fulfil the purposes for which it was collected.
Retention periods may vary depending on:
- Membership requirements
- Legal obligations
- Financial reporting requirements
- Project obligations
- Research activities
When data is no longer required, it will be securely deleted or anonymised.
IPPN implements appropriate technical and organisational measures to protect personal data, including:
- Secure website hosting
- Access controls
- Password protection
- Encryption where appropriate
- Security monitoring
- Staff and volunteer confidentiality obligations
Although no system can guarantee absolute security, reasonable measures are taken to protect personal information against unauthorised access, disclosure, alteration, or destruction.
Under applicable data protection laws, individuals may have the right to:
- Access personal data
- Correct inaccurate data
- Request deletion of data
- Restrict processing
- Object to processing
- Withdraw consent
- Request data portability
- Lodge a complaint with a supervisory authority
Requests can be submitted by contacting:
IPPN will respond within the timeframe required by applicable law.
The website and services are not directed at children under the age of 16 unless explicitly stated within a specific project.
Where required, parental or guardian consent will be obtained before collecting personal data from minors.
The website may contain links to external websites operated by third parties.
IPPN is not responsible for the privacy practices or content of external websites. Users should review the privacy policies of any third-party websites they visit.
As part of its mission to strengthen patient voices and support evidence-based advocacy, IPPN may conduct surveys, studies, consultations, and research initiatives.
Participation in such activities is generally voluntary.
Research data may be:
- Aggregated
- Anonymised
- Used for reports and publications
- Shared in statistical form
Personally identifiable information will not be publicly disclosed without appropriate legal grounds or consent.
IPPN events may include photography, video recording, livestreaming, or media coverage.
Images and recordings may be used for:
- Educational purposes
- Reporting
- Awareness campaigns
- Organisational communications
- Website and social media content
Participants will be informed when recording activities are planned and may be provided with options to opt out where feasible.
IPPN may update this Privacy Policy periodically.
Any updates will be published on:
The date at the top of this document indicates the most recent revision.
For privacy-related enquiries, requests, or complaints, please contact:
International Patient Power Network (IPPN)
Website: https://patient-power.net
Email: connect@patient-power.net
If concerns remain unresolved, individuals may contact the competent data protection authority in their jurisdiction.
© International Patient Power Network (IPPN). All rights reserved.