Privacy and Legal

At CPAM Parents, we know it’s a big deal to trust us with your personal information — especially when it involves your pregnancy, your baby, or your family’s health. We treat every detail you share with the same care and respect we would want for our own families. Protecting your privacy is not just a legal requirement to us — it’s a core part of building the safe, trustworthy community we want parents to have.

Who we are

We are CPAM Parents. We are a small, grassroots, parent-run organization that provides free support, resources and educational materials for families affected by congenital lung malformations. We are not currently a registered charity or nonprofit. We do not currently accept donations. If we accept donations in the future we will follow a not-for-profit model. Our website provides resources and materials for anyone anywhere in the world. Our peer support program (CPAM Parent Connections Program) is currently only offered in the United States.

The data protection officer is our privacy and compliance lead, Heather Raney. You can email her at heather@cpamparents.org

Your personal information

Personal information means any information that could identify you. When you get in touch with us, sign up with the Parent Connections program as a volunteer or new parent, or share your family’s story, we may ask for:

  • Your name, email address, and sometimes your phone number

  • Your baby or child’s diagnosis

  • Your stage of pregnancy or your child’s age

  • Your region of the world

As well as basic information, if you engage with our peer support CPAM Parent Connections Program, there are things the program director and your parent volunteer might need to know in order to provide you with safe and compassionate support. This could be quite sensitive and personal information about your pregnancy, your baby’s diagnosis, and how you’re doing. All this information is stored securely in line with industry standards and can only be accessed by the program director.

CPAM Parents will never sell, exchange, or release your personal information to third parties without your consent. We do not — and will not — disclose, sell, rent, or share any personally identifiable information collected through our programs, forms, or website.

We may occasionally share aggregated, non-identifiable information (for example: “80% of families joined during pregnancy”) to show how our program is being used. This information can never be used to identify you personally.

Our website may include external links to other sites. CPAM Parents does not control the privacy practices of those sites, and we encourage you to review their policies if you visit them.

How we use your information

We use your information only to:

  • Send you our newsletter if you have signed up (email and name)

  • Reply to you if you have filled out a contact form or sent us an email (email and name)

  • Provide support through the CPAM Parent Connections program (email, name, phone number, region of the world, information about you and your situation)

  • Improve our services by reviewing non-identifiable, generalized data (for example: “40% of parents reached out during pregnancy”)

How long we keep your information

We only keep your personal information for as long as it is needed for the purpose it was collected.

  • Parent Connections matches: We keep your information for the duration of your match, and for up to one year after the match ends, unless you ask us to delete it sooner.

  • Newsletter subscriptions: We keep your contact details until you unsubscribe, at which point your information is removed from our mailing list.

  • General inquiries: Information provided through contact forms or emails is kept only as long as needed to respond to your request.

  • Aggregated, non-identifiable data: We may keep anonymized statistics (such as the number of families who joined during pregnancy) indefinitely, since this information cannot be linked back to you.

If you are receiving communications from us then we will periodically ask you if you would still like to receive information from us and you are welcome to opt out at any time.

You may request deletion of your information at any time by contacting heather@cpamparents.org.

How to request deletion

You have the right to ask us to delete your information at any time. Just contact heather@cpamparents.org.

External links

Our website may include links to other websites. Please note that we are not responsible for the privacy practices of those sites.

Cookies and analytics

CPAM Parents uses cookies and similar technologies, which are small files or pieces of text that download to a device when a visitor accesses a website or app. Squarespace, our hosting platform, needs some personal data to run this website, and to protect and improve its platform and services. Squarespace analyzes the data in a de-personalized form.

For information about viewing the cookies dropped on your device, visit the cookies Squarespace uses.

Necessary and required cookies are always used, which allow Squarespace, our hosting platform, to securely serve this website to you.

Analytics and performance cookies are used on this website only when you opt-in via our cookie banner.

CPAM Parents takes your privacy seriously.

GDPR

The General Data Protection Regulation (EU GDPR) is a European privacy law that regulates how individuals and organizations may collect, use, and retain the personal data of individuals.

Following the exit of the United Kingdom of Great Britain and Northern Ireland (UK) from the European Union (EU), the EU GDPR forms part of the body of retained EU law in the UK (UK GDPR), along with the UK Data Protection Act 2018 (DPA 2018), continues to be part of UK law.

Under GDPR, every organization must explain the legal reason (“lawful basis”) for collecting and using personal information. At CPAM Parents, this is how we apply it:

  • Consent: For parents and families using our programs, we rely on your consent. When you complete a form (such as signing up for Parent Connections), you agree that we can use the information you provide to make a match and support you.

  • Legitimate Interest: For volunteers, supporters, and donors who already have an ongoing relationship with us, we rely on legitimate interest. For example, this allows us to send updates to volunteers about their training or program changes without asking for fresh consent every time.

  • Contract: GDPR also allows organizations to process information under a contract (for example, staff payroll details). CPAM Parents currently has no contracted staff, only volunteers, so this does not apply to us at this time.

Squarespace processes personal data in a way that meets the European Commission and UK Standard Contractual Clauses. Read more here.

As part of meeting GDPR regulations:

  • We have disabled activity log analytics.

  • We have disabled Squarespace’s non-essential cookies as default.

  • We display a banner so you can always manage your cookies settings.

  • We do not collect more information than we need from you.

  • You can always get in touch with us to find out what data we have from you.

  • You can always request that we delete your personal information at any time.

This privacy notice was last updated in September 2025. It is reviewed regularly.

Legal Disclaimer

  • Not medical advice
    All information on this website — including text, graphics, resources, and peer support — is for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment.

  • Emergency disclaimer
    If you believe you may be experiencing a medical emergency, call your doctor or your local emergency number immediately.

  • Peer support boundaries
    CPAM Parent Connections volunteers are not medical or mental health professionals. They offer support based on their personal experiences only. Peer support is not a substitute for professional medical advice, diagnosis, or treatment.

  • No liability
    CPAM Parents cannot be held responsible for medical decisions, outcomes, or actions taken based on information from this website or through peer support. Your healthcare team is always the best and only source for medical guidance.