Consumer Health Data Privacy Policy
Last updated: October 18, 2026
Behind the Smile is a Washington state nonprofit corporation. This policy explains how we handle personal information that identifies or may reveal health information about you or your child, including consumer health data covered by Washington’s My Health My Data Act.
1. Health information we collect
Depending on the services you request and the information you provide, we may collect:
Confirmation that you are expecting or caring for a baby diagnosed with a cleft lip and/or palate.
Pregnancy, due-date, birth-date, or age information provided for community participation or other requested support.
Health-related information you voluntarily include in questions, messages, family stories, photographs, or testimonials.
Information showing that you requested or participated in cleft-related education, care-package services, or community support.
Contact, account, delivery, and website-interaction information when linked to information that identifies health status or a request for health-related support.
We do not require medical records to establish care-package eligibility.
2. Sources of this information
We receive information directly from you, from a parent or caregiver authorized to provide it, and through the website, communication, and program platforms used to interact with us.
Website and course platforms may also generate account and interaction records when you use their features.
3. Why we collect and use it
We use this information to provide the services you request, including:
Confirming care-package eligibility and managing requests.
Communicating about and arranging package delivery.
Providing course access and responding to questions.
Organizing requested community support.
Publishing or sharing a story, photograph, or testimonial only with separate permission for that use.
We limit collection and sharing to what is necessary to provide a requested service or obtain the consent required by applicable law. Agreement to our general terms is not treated as consent to unrelated uses of health information.
4. Information we disclose and who receives it
The information disclosed depends on the service:
Website, course, form, email, and storage providers may process contact details, program information, messages, and related health information needed to provide their services.
Shipping providers receive contact and delivery information needed to deliver a package. We do not provide a child’s diagnosis as a separate shipping requirement.
Community platforms and other group members may receive profile details, group-participation information, and information you choose to share when you join or participate.
The public or specifically identified supporters may receive selected photographs, stories, or testimonials only with your separate permission for that disclosure.
We may also disclose information when required or otherwise permitted by applicable law.
We do not sell consumer health data, disclose it for targeted advertising, or give sponsors access to care-package applications. We do not share consumer health data with affiliated companies.
5. Your rights and how to exercise them
As provided by applicable law, you may:
Ask whether we collect, share, or sell consumer health data about you and request access to that information.
Request a list of third parties and affiliates with whom your consumer health data has been shared or sold, together with a way to contact them.
Withdraw consent for future collection or sharing.
Request deletion of your consumer health data.
Parents or other legally authorized representatives may submit requests on behalf of a child or another person.
Email marina@behindthesmile.org to make a request. You do not need to create a new account. We may request information reasonably needed to verify your identity or authority.
We respond without undue delay and within 45 days. If a legally permitted extension is necessary, we will notify you within that period and explain the reason. An extension will not exceed an additional 45 days.
When required, we will notify service providers and other recipients of a deletion request and direct them to delete the relevant information. Applicable legal rules govern deletion from backups.
We will not unlawfully discriminate against you for exercising your privacy rights. If information is necessary to provide a service you requested, its deletion or withdrawal of necessary consent may affect our ability to continue that service.
6. Appeals and complaints
If we decline your request, you may appeal by emailing marina@behindthesmile.org with “Privacy Appeal” in the subject line.
We will respond to an appeal within 45 days and explain our decision. If the appeal is denied, we will provide information about submitting a complaint to the Washington State Attorney General. You may also visit www.atg.wa.gov for information about consumer complaints.
7. Changes and contact
We will update this policy when our practices change. Before collecting additional categories of consumer health data or using or sharing it for additional purposes, we will provide the disclosures and obtain any consent required by law.
For questions about this policy, email: marina@behindthesmile.org