Privacy Policy
Effective Date: May 21, 2026. Last Updated: May 21, 2026.
1. Introduction
Welcome to Parkinson’s Resilience Institute (“PRI,” “we,” “our,” or “us”). We are committed to protecting the privacy, confidentiality, and security of personal information entrusted to us by individuals who visit our websites, participate in our programs, communicate with us, or otherwise engage with our services.
This Privacy Policy explains how we collect, use, disclose, store, and protect information obtained through our website, digital platforms, educational programs, events, support services, fundraising activities, research initiatives, and related communications.
This Privacy Policy is intended to comply with applicable United States privacy, healthcare, consumer protection, and data security laws, including, where applicable:
The Health Insurance Portability and Accountability Act of 1996 (“HIPAA”)
The Health Information Technology for Economic and Clinical Health Act (“HITECH”)
State consumer privacy laws
Federal Trade Commission (“FTC”) consumer protection requirements
Children’s privacy regulations where applicable
Applicable nonprofit governance and fundraising privacy standards
By accessing or using PRI services, you acknowledge that you have read and understood this Privacy Policy.
2. Scope of This Policy
This Privacy Policy applies to:
PRI websites and microsites
Online forms and portals
Email communications
Educational resources and webinars
Support communities and digital engagement platforms
Surveys, assessments, and questionnaires
Fundraising and donor engagement activities
Mobile applications and digital tools operated by PRI
Research or pilot programs conducted or sponsored by PRI
This Privacy Policy does not apply to third-party websites, applications, or services that may be linked from PRI platforms.
3. Information We Collect
We may collect the following categories of information.
3.1 Personal Information
Personal information may include:
Name
Mailing address
Email address
Telephone number
Date of birth
Emergency contact information
Organization or employer affiliation
Demographic information
Donation history
Communication preferences
3.2 Health-Related Information
Depending on the services or programs involved, PRI may collect health-related information such as:
Parkinson’s diagnosis information
Symptom descriptions
Medication information
Treatment experiences
Wellness assessments
Caregiver information
Mobility, cognitive, or emotional health information
Survey responses related to health status or quality of life
Certain health information may constitute Protected Health Information (“PHI”) under HIPAA when collected, stored, transmitted, or maintained in connection with covered healthcare activities or business associate relationships.
3.3 Technical and Usage Information
We may automatically collect:
IP address
Browser type
Device identifiers
Operating system
Geographic region
Pages viewed
Session duration
Referral sources
Cookies and tracking technologies
Analytics and performance data
3.4 Payment and Donation Information
If you make a donation or payment, we or our payment processors may collect:
Billing information
Transaction history
Payment method details
Donation preferences
PRI does not store full payment card numbers on its servers unless specifically disclosed.
3.5 Communications and User-Generated Content
We may collect information you provide through:
Contact forms
Email correspondence
Support groups
Community forums
Surveys
Event registrations
Social media interactions
Testimonials or stories submitted voluntarily
4. How We Use Information
PRI may use information for the following purposes:
Providing programs, education, support, and services
Responding to inquiries and support requests
Managing memberships, registrations, or participation
Conducting assessments or wellness initiatives
Facilitating support communities and events
Processing donations and acknowledgements
Improving website functionality and user experience
Conducting research and program evaluation
Developing educational materials and outreach efforts
Sending newsletters, updates, and marketing communications
Complying with legal, regulatory, and contractual obligations
Protecting against fraud, abuse, or security threats
Enforcing our terms, policies, and organizational rights
Where required by law, we will obtain appropriate consent before using personal information for marketing or other secondary purposes.
5. HIPAA Compliance and Protected Health Information
PRI is committed to safeguarding health-related information in accordance with applicable healthcare privacy and security standards.
5.1 Covered Entity and Business Associate Considerations
Depending on the nature of the services provided, PRI may operate:
As a non-covered educational or support organization;
As a business associate to healthcare providers or healthcare organizations; or
In collaboration with covered healthcare entities.
When PRI receives or maintains Protected Health Information (“PHI”) subject to HIPAA, PRI will implement safeguards designed to comply with applicable HIPAA Privacy Rule, Security Rule, and Breach Notification Rule requirements.
5.2 Permitted Uses and Disclosures of PHI
Where HIPAA applies, PRI may use or disclose PHI:
To provide authorized services
For healthcare operations and coordination
As authorized by the individual
As required by law
To prevent serious threats to health or safety
For public health reporting where legally required
5.3 Safeguards
PRI maintains administrative, technical, and physical safeguards intended to protect PHI and other sensitive information, including:
Access controls
Encryption where appropriate
Secure storage systems
Workforce confidentiality obligations
Vendor and contractor oversight
Incident response procedures
Security monitoring and risk management practices
5.4 HIPAA Rights
Where applicable, individuals may have rights regarding their PHI, including:
Access to records
Requests for corrections or amendments
Restrictions on certain uses or disclosures
Confidential communications requests
Accounting of disclosures
Requests for copies of records
Requests may be submitted using the contact information listed at the end of this Privacy Policy.
6. Legal Bases for Processing
Where applicable law requires, PRI processes personal information based on one or more of the following:
Consent
Performance of services requested by the individual
Compliance with legal obligations
Legitimate organizational interests
Protection of vital interests
Public interest or research purposes
7. Cookies and Tracking Technologies
PRI may use cookies, analytics tools, pixels, and similar technologies to:
Improve website functionality
Analyze traffic and engagement
Personalize content
Measure campaign effectiveness
Support security and fraud prevention
Users may manage cookie preferences through browser settings or available consent tools.
8. Sharing and Disclosure of Information
PRI does not sell personal information. We may share information under the following circumstances:
8.1 Service Providers
We may share information with trusted vendors and contractors that provide services such as:
Website hosting
Payment processing
Email communications
Analytics
Cloud storage
Customer relationship management
Event management
Security and IT support
Service providers are expected to maintain appropriate confidentiality and security safeguards.
8.2 Healthcare and Research Partners
Where authorized or legally permitted, PRI may share information with:
Healthcare providers
Research institutions
Clinical collaborators
Universities
Medical advisory organizations
Health-related information used for research may be de-identified where appropriate.
8.3 Legal and Regulatory Requirements
PRI may disclose information when required to:
Comply with legal obligations
Respond to subpoenas or court orders
Cooperate with law enforcement
Protect rights, safety, or property
Investigate fraud or security incidents
8.4 Organizational Transactions
In the event of a merger, restructuring, partnership, grant transition, or transfer of organizational assets, information may be transferred subject to applicable confidentiality protections.
9. Data Retention
PRI retains personal information only for as long as reasonably necessary to:
Fulfill the purposes described in this Privacy Policy
Comply with legal, tax, accounting, or regulatory obligations
Resolve disputes
Enforce agreements
Support research or archival obligations where permitted
Retention periods may vary depending on the type of information and legal requirements.
10. Data Security
PRI maintains commercially reasonable administrative, technical, and physical safeguards designed to protect information against unauthorized access, disclosure, alteration, or destruction.
Security measures may include:
Encryption
Secure hosting environments
Access restrictions
Multi-factor authentication
Security training
Monitoring and logging
Vulnerability management
Incident response procedures
No method of electronic transmission or storage is completely secure. PRI cannot guarantee absolute security.
11. Data Breach Notification
In the event of a data breach involving personal information or PHI, PRI will provide notifications as required under applicable law, including HIPAA breach notification requirements where applicable. PRI may notify affected individuals, regulatory agencies, law enforcement, and other parties as required.
12. Your Privacy Rights
Depending on applicable law and your jurisdiction, you may have rights to:
Access personal information
Correct inaccurate information
Delete certain information
Restrict or object to certain processing
Withdraw consent
Request data portability
Opt out of certain communications
Appeal privacy-related decisions where applicable
PRI will respond to qualifying requests within applicable legal timeframes.
13. Marketing Communications
PRI may send newsletters, educational materials, event announcements, fundraising communications, or updates. Recipients may opt out of marketing communications at any time using unsubscribe links or by contacting PRI directly. Operational, legal, transactional, or service-related communications may still be sent when necessary.
14. Children’s Privacy
PRI does not knowingly collect personal information from children under 13 without appropriate parental consent. If PRI becomes aware that information from a child under 13 has been collected improperly, we will take reasonable steps to delete it.
15. Research, Surveys, and Program Evaluation
PRI may conduct research studies, surveys, assessments, and program evaluations to improve services, contribute to scientific understanding, or support organizational objectives. Participation in research activities may be subject to separate informed consent documents, authorizations, or institutional review requirements. Where possible and appropriate, research information may be aggregated or de-identified.
16. Third-Party Platforms and Social Media
PRI may maintain profiles or communities on third-party platforms including social media services. Information shared publicly through those platforms may be visible to others and governed by the privacy practices of the platform providers. Users should review the privacy policies of third-party platforms before engaging.
17. International Users
PRI primarily operates in the United States. If users access PRI services from outside the United States, information may be transferred to and processed in the United States or other jurisdictions. By using PRI services, international users acknowledge such transfers.
18. Accessibility and Accommodations
PRI is committed to making its services and communications accessible to individuals with disabilities. Individuals requiring accommodations related to privacy requests or communications may contact PRI using the information below.
19. Changes to This Privacy Policy
PRI may update this Privacy Policy periodically to reflect operational, legal, regulatory, or technological changes. Updated versions will be posted with revised effective dates. Continued use of PRI services following updates constitutes acceptance of the revised policy.
20. Contact Information
Questions, concerns, requests, or complaints regarding this Privacy Policy or PRI privacy practices may be directed to: Parkinson’s Resilience Institute, 16923 Country Bridge Road, Houston, Texas | 713-201-5679 | info@parkinsonsresilience.org | www.ParkinsonsResilience.org
Privacy Officer: Tim Johnson, Director | t.johnson@parkinsonsresilience.org
21. Additional HIPAA Notice
If PRI operates as a HIPAA-covered entity or business associate for specific services or programs, individuals may also receive a separate HIPAA Notice of Privacy Practices describing:
How PHI may be used and disclosed
Individual HIPAA rights
Complaint procedures
Legal duties regarding PHI
That Notice of Privacy Practices will govern to the extent required by applicable law.
22. California and State Privacy Rights
Residents of certain states, including California, Colorado, Connecticut, Virginia, and others, may have additional rights regarding personal information under applicable state privacy laws.
Such rights may include:
Rights to know what information is collected
Rights to request deletion
Rights to correct information
Rights to opt out of certain data uses
Rights to limit sensitive information processing
Rights against discrimination for exercising privacy rights
PRI will honor qualifying requests in accordance with applicable law.
23. AI, Digital Health, and Emerging Technologies
PRI may use digital tools, automation systems, analytics platforms, or artificial intelligence technologies to improve educational resources, user experiences, operational efficiency, or research capabilities.
24. Medical Diagnoses or Treatments
PRI does not make medical diagnoses or provide any form of medical treatments. Users should not rely on PRI content, tools, or digital systems as a substitute for professional medical advice, diagnosis, or treatment.
24. Disclaimer
This Privacy Policy is provided for general informational and operational purposes and does not constitute legal advice. PRI should consult qualified legal counsel to review this policy and ensure compliance with all federal, state, nonprofit, healthcare, fundraising, accessibility, and international privacy obligations applicable to its operations.