Privacy Policy
Last Updated: September 2026
The International Association for Premenstrual Disorders (“IAPMD,” “we,” “us,” or “our”) respects your privacy and is committed to protecting the personal information entrusted to us.
IAPMD is a nonprofit organization providing education, advocacy, resources, peer support, research engagement, and community programs relating to premenstrual disorders, including Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation (PME).
Because our work relates to physical and mental health, people may choose to share information with us that is sensitive. We take a data-minimization approach and seek to collect and retain only the personal information reasonably necessary to provide our services and operate our organization.
This Privacy Policy explains what information we may collect, why we collect it, how it may be used and shared, the services that may process it, how we protect it, how long it may be retained, and the privacy rights that may be available to you.
1. Who We Are
The International Association for Premenstrual Disorders (IAPMD) is a U.S.-based 501(c)(3) nonprofit public charity serving an international community. IAPMD also has affiliated organizations in other countries, including IAPMD UK and IAPMD Canada. Where one of these organizations independently collects or controls personal information, that organization may be responsible for the relevant processing under applicable local law. If you are unsure which IAPMD entity is responsible for information you have provided, please contact us.
EIN: 47-2480088
2. Scope of This Policy
This Privacy Policy applies to personal information collected through www.iapmd.org. Third-party websites, social media platforms, healthcare providers, researchers, and other organizations linked from IAPMD’s website have their own privacy practices and are not governed by this Privacy Policy unless expressly stated otherwise. IAPMD-operated programs and services that link to this policy include:
Website forms
Newsletter subscriptions and communications
Donations and purchases
Peer-support registration
The PMD Self-Screen
Volunteer applications
Events and webinars
Surveys and community-engagement activities
Research activities conducted directly by IAPMD
3. Information We Collect
The information we collect depends on how you interact with IAPMD.
General Contact and Forms
When you contact IAPMD or complete one of our forms, we may collect information such as:
Name
Email address
Telephone number
Country or region
Mailing address, when necessary
Organization or professional affiliation
Information you voluntarily include in your message or form response
Our online forms are primarily provided through Jotform. Because IAPMD works in reproductive and mental health, people sometimes voluntarily include sensitive health or personal information when contacting us. Please provide only information reasonably necessary for your request.
Newsletter and Email Communications
IAPMD uses Mailchimp to manage newsletter subscriptions and email communications. We may collect your name, email address, country or region, communication preferences, and information associated with your subscription and interactions with our communications.
We may send educational resources, organizational updates, fundraising communications, advocacy information, event information, research opportunities, and other material consistent with your subscription.
You may unsubscribe from marketing communications at any time using the unsubscribe link in our emails. We may retain limited information necessary to ensure that your unsubscribe request continues to be honored.
We may also send non-marketing communications where reasonably necessary in connection with a transaction, donation, program, registration, privacy request, volunteer relationship, or other interaction with IAPMD.
Donations and Purchases
When you donate to IAPMD or purchase something through our website, we may collect information necessary to process the transaction and maintain appropriate financial records, including:
Name and contact information
Billing information
Donation or purchase amount
Transaction date
Transaction history
Donations are currently processed through Bank of America through our website. Purchases may be processed through payment services integrated with Squarespace, including Stripe or PayPal, depending on the transaction. Complete payment-card information is processed by the applicable payment provider rather than retained by IAPMD as part of its ordinary organizational records.
Volunteer Applications
Volunteer applications are generally collected through Jotform. Depending on the role, we may request contact information, experience, qualifications, interests, availability, references, and other information reasonably relevant to assessing or administering the volunteer relationship.
Some applicants may voluntarily disclose lived experience or health-related information. Unless specifically requested and necessary for a particular role, applicants are not required to provide detailed medical or health information.
4. Peer Support and Privacy
IAPMD provides volunteer-based peer support. Peer support is not medical treatment, psychotherapy, clinical care, or an emergency or crisis service.
IAPMD intentionally minimizes the personal information retained about people using its peer-support services. We do not maintain participant case files, clinical records, medical histories, or ongoing individual peer-support records.
Registration for certain peer-support events or groups may require limited information, such as a name, email address, registration information, or other details necessary to participate. Registration and participation may involve third-party platforms such as Eventbrite, Zoom, Squarespace, or Jotform.
During peer-support conversations or groups, participants may voluntarily discuss personal or sensitive matters, including PMDD or PME symptoms, mental health, relationships, treatment experiences, self-harm, or suicidality. These conversations do not result in IAPMD creating a clinical or participant health record.
Participants in group peer support should understand that information disclosed to other participants cannot be guaranteed to remain confidential. IAPMD asks participants to respect one another's privacy, but we cannot control every participant's actions.
Third-party platforms used to register for or provide peer support may process limited technical or registration information in accordance with their own privacy practices.
5. PMD Self-Screen
IAPMD provides a PMD Self-Screen as an educational screening tool to help individuals identify whether their symptoms may be consistent with a premenstrual disorder and whether they may wish to discuss their symptoms with a qualified healthcare professional. The PMD Self-Screen is an educational screening tool. It does not provide a medical or psychiatric diagnosis and is not a substitute for evaluation, diagnosis, or treatment by a qualified healthcare professional.
The Self-Screen is delivered through Jotform using IAPMD's HIPAA-enabled Jotform account.
Information submitted through the Self-Screen may include information about your menstrual cycle, emotional and physical symptoms, mental health, functional impairment, and other health-related experiences. This information may be considered sensitive personal information, health information, or special-category personal data under applicable privacy laws.
Completed Self-Screen responses are stored within Jotform and may be accessed by authorized IAPMD personnel where there is a legitimate organizational need. Jotform may also process technical information associated with a submission, such as an IP address, in accordance with its platform settings and privacy practices.
IAPMD seeks to minimize the amount of directly identifying information collected through the Self-Screen and restricts access to Self-Screen information. Information submitted through the Self-Screen may be used to operate and evaluate the screening tool, improve IAPMD's educational resources and services, and better understand community needs. Where Self-Screen information is used for statistical analysis, evaluation, reporting, research, or understanding community needs, IAPMD seeks to use aggregated, anonymized, or de-identified information whenever reasonably possible.
IAPMD does not sell Self-Screen information or personal health information and does not use Self-Screen responses for targeted advertising.
Self-Screen information is retained only for as long as reasonably necessary for the purposes described in this Privacy Policy. It is deleted or de-identified in accordance with IAPMD's data-retention practices.
6. Surveys, Research and Community Engagement
IAPMD may conduct surveys, needs assessments, community consultations, advisory activities, and research-related projects.
IAPMD primarily uses Jotform for surveys it conducts directly. Other platforms, including Qualtrics or SurveyMonkey, may be used for particular projects.
Where a research project is conducted by an outside researcher, university, healthcare institution, or other organization, that organization may be responsible for the information collected. It should provide its own consent and privacy information.
Participation in research and surveys is voluntary.
When a particular project involves sensitive personal information, research participation, publication, or additional data uses, participants may receive a separate consent form, participant information sheet, or project-specific privacy notice explaining those practices.
Where possible and appropriate, IAPMD seeks to use anonymous, de-identified, or aggregated information for research, evaluation, reporting, and advocacy.
7. Information Collected Automatically, Cookies and Analytics
When you visit IAPMD.org, Squarespace and other technologies used on the website may automatically collect information such as:
IP address
Browser and device information
Operating system
Pages visited
Referring website
Approximate geographic location
Date and time of access
Website interactions
Cookie or analytics identifiers
We may use this information to operate and secure the website, understand how it is used, evaluate the effectiveness of our resources and outreach, and improve our services.
IAPMD uses cookies and similar technologies, which may be provided by Squarespace, Google Analytics, Google Ads, and other services, to operate, secure, measure, and evaluate our website.
These technologies may be used for essential website functionality, security, preferences, analytics, measurement, and, where applicable, advertising or campaign measurement.
Where required by applicable law, non-essential cookies or tracking technologies will be activated only after obtaining appropriate consent. Users may manage available cookie preferences through our website's cookie-consent mechanism and adjust cookie settings in their browser.
Simply visiting IAPMD.org does not constitute consent to processing for which applicable law requires affirmative consent.
IAPMD does not use sensitive health information submitted through the PMD Self-Screen for targeted advertising.
8. How We Use Personal Information
Depending on the service involved, IAPMD may use personal information to:
Respond to inquiries
Provide requested resources or services
Administer peer-support registration
Operate and evaluate educational screening tools
Process donations and purchases
Manage newsletter subscriptions
Administer volunteer programs
Organize events and webinars
Conduct surveys and community engagement
Conduct or support appropriate research activities
Maintain required financial and organizational records
Understand and improve our website and programs
Measure the effectiveness of outreach and advertising campaigns
Maintain website and information security
Prevent fraud, abuse, or misuse
Meet legal and regulatory obligations
Protect the rights and safety of IAPMD and others
IAPMD does not use sensitive health information for targeted advertising.
9. Legal Bases for Processing in the UK and European Economic Area
Where the UK General Data Protection Regulation (“UK GDPR”) or European Union General Data Protection Regulation (“GDPR”) applies, IAPMD processes personal information under one or more appropriate legal bases depending on the activity. These may include:
Consent — where you have affirmatively agreed to a particular use of your information.
Contract — where processing is necessary to provide something you have requested or complete a transaction.
Legal obligation — where processing is necessary for IAPMD to comply with applicable law.
Legitimate interests — where processing is reasonably necessary for IAPMD's legitimate nonprofit activities and those interests are not overridden by your rights and interests.
Where IAPMD processes special-category personal data, including health information, we will also rely upon an appropriate condition permitted by applicable law, which may include explicit consent where required.
Where processing is based on consent, you may withdraw your consent at any time. Withdrawal does not affect processing that lawfully occurred before consent was withdrawn.
General use of our website or acceptance of this Privacy Policy is not treated as consent where applicable law requires separate affirmative consent.
10. Third-Party Service Providers and Websites
IAPMD relies on third-party services to operate our website, programs, communications, and organizational activities. Current services may include:
Squarespace — website hosting, website functionality, registration, and e-commerce
Jotform — forms, volunteer applications, the PMD Self-Screen, surveys, and other data collection
Mailchimp — newsletters and email communications
Eventbrite — event and peer-support registration
Zoom — virtual meetings, webinars, and peer-support sessions
Google Analytics — website analytics
Google Ads — advertising and campaign measurement
Google Workspace and Google Drive — organizational communications, documents, and records
Bank of America — donation and payment processing
Stripe and/or PayPal — payment processing associated with applicable website purchases
These providers may process personal information on IAPMD's behalf or, in some circumstances, for their own purposes as described in their respective privacy policies.
IAPMD seeks to provide service providers only with information reasonably necessary for the relevant service. Using third-party service providers does not mean that IAPMD sells personal information.
IAPMD.org may also contain links to healthcare information, research studies, crisis resources, organizations, healthcare providers, articles, services, and other third-party websites. Those websites and services are governed by their own privacy practices. A link from IAPMD does not mean that IAPMD controls the privacy or security practices of the third party.
11. When We May Share Personal Information
IAPMD may disclose personal information:
To service providers reasonably necessary to operate our organization and services;
When you direct or authorize us to do so;
When required by applicable law, legal process, court order, or lawful governmental request;
Where reasonably necessary to investigate fraud, misuse, or a security incident;
Where permitted or required by law to address a serious and immediate safety concern;
To professional advisers where reasonably necessary; or
As otherwise disclosed to you at the time information is collected.
IAPMD does not sell personal health information.
12. International Data Transfers
IAPMD is based in the United States and serves an international community.
Our service providers operate in multiple countries. Personal information may therefore be processed or stored outside the country in which you live, including in the United States.
Where applicable privacy laws require safeguards for international transfers, IAPMD seeks to use appropriate safeguards or transfer mechanisms recognized under applicable law.
Privacy and data-protection laws in countries where information is processed may differ from those in your home jurisdiction.
13. Data Retention
IAPMD seeks to retain personal information only for as long as reasonably necessary for the purpose for which it was collected or as required for legal, financial, contractual, security, research, or organizational purposes.
Retention periods vary according to the type of information and the reason it was collected. For example:
Peer support: IAPMD does not maintain participant case files, clinical records, or ongoing individual peer-support records.
Peer-support and event registration: Information is retained only as reasonably necessary to administer the activity and meet related organizational requirements.
Newsletter subscriptions: Subscription information is retained while you remain subscribed and for as long as necessary to maintain unsubscribe or suppression records.
Volunteer information: Information is retained as reasonably necessary to administer volunteer applications and relationships.
Financial, purchase and donation records: Records are retained as required by applicable tax, accounting, nonprofit, and financial requirements.
Self-Screen information: Responses stored through Jotform are retained only as long as reasonably necessary for the purposes described in this policy and may subsequently be deleted, anonymized, or de-identified.
Research and survey information: Retention is determined by the applicable project, consent information, research protocol, or organizational requirements.
Website and analytics information: Information is retained in accordance with IAPMD's settings and the applicable service provider's retention configuration.
Where information is no longer required in identifiable form, IAPMD may delete, anonymize, or aggregate it.
14. Privacy and Information Security
IAPMD is committed to respecting your privacy and taking reasonable steps to protect the personal information entrusted to us.
We use reasonable administrative, technical, and organizational safeguards designed to protect personal information against unauthorized access, use, disclosure, alteration, or loss. Access to personal information is limited where reasonably appropriate based on organizational roles and responsibilities.
IAPMD uses third-party service providers to support various aspects of our operations. These providers operate their own systems and maintain their own privacy and security practices. Where appropriate, we consider privacy and security when selecting and using service providers.
Despite reasonable safeguards, no website, electronic transmission, or method of data storage can be guaranteed to be completely secure. IAPMD therefore cannot guarantee the absolute security of personal information transmitted to us or maintained by our service providers or us.
Security Incidents and Data Breaches
If IAPMD becomes aware of a security incident involving personal information, we will take reasonable steps to investigate, contain, and address the incident.
Where required by applicable law, we will provide appropriate notification to affected individuals, regulatory authorities, or others.
Your Role in Protecting Information
When communicating with IAPMD electronically, please use appropriate care when sharing personal or sensitive information.
If you believe that personal information you have provided to IAPMD may have been accessed, used, or disclosed without authorization, please contact us using the contact information provided in this Privacy Policy.
15. Your Privacy Rights
Depending on where you live and which privacy laws apply, you may have rights concerning your personal information. These may include the right to:
Request access to personal information IAPMD holds about you
Request correction of inaccurate information
Request deletion of certain personal information
Request restriction of certain processing
Object to certain processing
Withdraw consent where processing relies upon consent
Request portability of certain information
Opt out of certain processing where applicable
Unsubscribe from marketing communications
Lodge a complaint with an applicable privacy or data-protection regulator
These rights vary by jurisdiction and are not absolute. We may need to verify your identity before fulfilling certain requests.
To exercise an applicable privacy right, contact info@iapmd.org. IAPMD will respond within the time required by applicable law.
UK and European Economic Area
Where the UK GDPR or EU GDPR applies, individuals may have applicable rights including access, rectification, erasure, restriction, objection, portability, and withdrawal of consent.
Individuals may also have the right to lodge a complaint with an applicable supervisory authority. UK residents may contact the Information Commissioner's Office (ICO). Individuals in the European Economic Area may contact the data-protection authority responsible for their country or region.
Canada
Where Canadian privacy legislation applies, individuals may have rights regarding access to and correction of personal information, and the manner in which it is collected, used, disclosed, and protected.
Individuals may also have the right to contact the Office of the Privacy Commissioner of Canada or an applicable provincial privacy authority.
United States
Residents of certain U.S. states may have additional privacy rights under applicable state privacy laws. Depending on the law and whether it applies to IAPMD or a particular activity, these may include rights to access, correct, delete, or obtain a copy of personal data and rights relating to certain processing of sensitive data.
Where affirmative consent is legally required for processing sensitive personal information, IAPMD will seek appropriate consent rather than treating general website use or acceptance of this Privacy Policy as consent.
IAPMD will not discriminate against an individual for exercising an applicable privacy right.
16. Children and Young People
IAPMD provides educational information and certain resources that may be relevant to adolescents, their families, caregivers, healthcare professionals, and educators.
We recognize that additional privacy protections may apply when personal information is collected from children and young people. Age and consent requirements vary by jurisdiction and may also depend upon the particular service being provided.
Where parental or guardian consent is legally required for a particular activity, IAPMD will seek such consent or limit access to the activity, as appropriate.
IAPMD does not knowingly use children's sensitive personal information for targeted advertising.
Specific youth programs or activities may have additional eligibility, consent, safeguarding, and privacy requirements.
A parent or guardian who believes that a child has provided personal information to IAPMD inappropriately may contact us using the privacy contact information below.
17. Social Media and Online Communities
IAPMD maintains accounts and communities on third-party social-media platforms. When you interact with IAPMD through one of these platforms, the platform may independently collect and process information in accordance with its own privacy policy.
Information posted publicly may be visible to other people.
Although IAPMD establishes expectations concerning confidentiality and respectful participation in moderated communities, we cannot guarantee that another participant will not save, copy, disclose, or share information.
Please consider this before disclosing sensitive personal or health information on social media platforms or in online communities.
18. Changes to This Privacy Policy
IAPMD may update this Privacy Policy periodically to reflect changes in our programs, technology, service providers, data practices, or legal obligations.
When changes are made, we will update the Last Updated date at the top of this page.
Where required by applicable law, we will provide additional notice or obtain appropriate consent before materially changing how previously collected personal information is used.
19. Contact Us
Questions, concerns, privacy requests, or complaints regarding this Privacy Policy or IAPMD's handling of personal information may be directed to:
International Association for Premenstrual Disorders (IAPMD)
6 Liberty Square | #2077
Boston, MA 02109
Email: info@iapmd.org if your request concerns a specific IAPMD service or program, please identify the service when contacting us so we can direct your request appropriately.