Privacy Policy | HUWE1 Foundation

Effective date: November 1, 2026 | Last updated: November 4, 2026

1. Who we are and what this policy covers

The HUWE1 Foundation ("we," "us," "our") is a patient-led, 501(c)(3) nonprofit organization based in Jackson, Wyoming. We unite families, clinicians, and researchers to advance research, support families, and accelerate treatments for HUWE1-related disorders. Our Charity ID is [42-3690671, confirm].

This policy explains what personal information we collect, how we use and share it, and the choices you have. It applies to our website at www.huwe1foundation.org, our donation page, the HUWE1 Foundation Family Registry, our emails and events, and any other way you interact with us. It also explains how we relate to the research platforms we point families to, such as RARE-X and COMBINEDBrain, which have their own privacy terms.

By using our website or giving us your information, you acknowledge this policy. If you do not agree with it, please do not use our services.

2. Information we collect

Information you give us

  • Donors and supporters: name, mailing address, email address, phone number, donation amount and history, communication preferences, and tribute or in-honor/in-memory-of details you choose to share.

  • Payment information: payments are processed by [BUTTER???]. We do not store full card numbers or security codes. We receive limited details such as the last four digits of your card, billing address, and transaction confirmation.

  • Family Registry participants: contact details, location, and your connection to someone with a HUWE1-related disorder (for example, parent, caregiver, or the affected individual). The Family Registry is not a scientific research registry. It is not intended to collect detailed medical histories or track symptoms over time.

  • Volunteers, event attendees, and newsletter subscribers: contact details and any information you provide when you sign up or register.

  • Researchers and clinicians: name, institution, contact details, and materials you submit when you collaborate with us or apply for funding.

  • Messages to us: the content of emails, forms, and other communications.

Information collected automatically

When you visit our website, we and our service providers may collect your IP address, device and browser type, pages viewed, referring pages, and the date and time of your visit, using cookies and similar technologies. See Section 9.

Health-related information

The Family Registry and our website forms do not ask for detailed health information. Please do not include medical details about yourself or others in registry entries, donation notes, tribute messages, or contact forms unless you want us to have them. The fact that you or a family member is affected by a HUWE1-related disorder is itself health-related information, and we treat it as sensitive. We use it only to stay in touch with you, share updates and opportunities, and understand where our community is located. We will not use it for advertising and will not share it for marketing purposes. [Attorney to confirm obligations under state consumer health data laws, such as Washington's My Health My Data Act, given that registry entries identify a health connection.]

If you choose to share a family story for our website or materials, we will publish it only with your written permission, and you may ask us to remove it.

3. Research platforms we work with

We encourage families to take part in research through partner organizations. Information you give to those organizations is collected and controlled by them, not by us, unless we say otherwise at the time.

  • RARE-X: a nonprofit research data platform that collects health, development, and medical history information through online questionnaires. Participation is voluntary, and its consent terms explain how data is coded, used, and shared with researchers.

  • COMBINEDBrain: a nonprofit that supports research on rare neurodevelopmental disorders. We plan to work with it to offer opportunities to contribute biological samples. Before any sample program opens, families will receive information on how samples will be collected, stored, used, and shared, along with consent requirements.

We do not receive your RARE-X questionnaire answers or your samples. [Confirm. If the Foundation will receive de-identified or aggregate data from partners, say so here and describe it.] The Family Registry and these research platforms are separate, and joining one does not enroll you in the other.

4. Information about children

Most information we receive concerns children and adults with HUWE1-related disorders, and it is usually provided by a parent or legal guardian. We ask that only a parent, guardian, or an adult who is the affected person provide this information. By submitting information about a child, you confirm you have the authority to do so. We do not knowingly collect personal information directly from children under 13. If a child has given us personal information, contact us and we will delete it. A parent or guardian may review, correct, or delete a child's information at any time by contacting us.

5. How we use your information

We use personal information to:

  • Process donations, issue receipts and acknowledgments, and maintain required tax and financial records

  • Thank, update, and communicate with donors, families, and supporters, including appeals for support

  • Connect with registry families, share research developments, and tell you about opportunities to take part in research

  • Understand where our community is located and what families need, using summary or aggregate information that does not identify you

  • Plan and run events and volunteer activities

  • Operate, secure, and improve our website and services

  • Respond to your questions and requests

  • Comply with legal obligations, including federal and state charity regulations, and enforce our policies

[EU/UK visitors: our legal bases for processing are performance of a contract or steps you request, our legitimate interests in fundraising and community engagement, compliance with legal obligations, and your consent, including for health-related information, certain cookies, and marketing emails.]

6. How we share your information

We do not sell your personal information, and we do not rent or trade our donor or family lists. 

We will not share your personal information from the Family Registry with researchers or outside organizations without your permission. We limit access to authorized team members.

We share information only as follows:

  • Service providers that work on our behalf under confidentiality and data protection obligations, such as our website host (Squarespace), payment processor, form and registry tools (for example, Google Forms), email platform, and accounting and professional advisors. [List actual vendors.]

  • Research partners, with your permission: if you agree, we may introduce you to or share information with a researcher or research platform for a stated purpose.

  • Public recognition: if we publish donor lists or honor rolls, we will list donor names as described in those materials. Donors may request to give anonymously, and we will honor that request.

  • Legal and safety reasons: where required by law, subpoena, or regulatory request, or to protect our rights, property, or safety or that of others.

  • Organizational changes: in connection with a merger, dissolution, or transfer of our programs, with any recipient bound to protect your information consistent with this policy.

  • With your consent or at your direction.

We may share summary or aggregate information that does not identify you, for example the number of participating families or their countries, with funders, researchers, and the public.

7. Your choices and rights

  • Emails: use the unsubscribe link in any message or contact us. We will still send necessary transactional messages such as receipts.

  • Mail and phone: ask us to remove you from mailing or calling lists at hello@huwe1foundation.org.

  • Family Registry: you may ask us to update or remove your registry entry at any time.

  • Cookies: you can manage cookie preferences through your browser settings [and our cookie banner]. We honor browser-based opt-out signals such as Global Privacy Control where required.

  • Access, correction, and deletion: you may ask us what personal information we hold about you, request corrections, or ask us to delete it. We may need to keep certain records, for example donation records required for tax and legal compliance, and we will tell you if so.

We offer these choices to all individuals regardless of where they live. [Residents of certain states and countries have additional rights under local law. Attorney to confirm whether any state privacy laws apply to us and whether state-specific sections are needed.]

To make a request, contact us at hello@huwe1foundation.org or the mailing address in Section 12. We may verify your identity before acting on a request and will respond within [45] days. If we decline a request, you may appeal by replying to our response.

International visitors, families, and donors: the HUWE1 Foundation is based in the United States, and information we collect is processed and stored there. If you are in the European Economic Area or the United Kingdom, you may also have the right to object to or restrict processing, to data portability, and to lodge a complaint with your local data protection authority. By submitting information to us, you understand it will be transferred to the United States. [Attorney to confirm transfer mechanism, such as standard contractual clauses, for vendors where required.]

8. Data security and retention

We use reasonable administrative, technical, and physical safeguards to protect personal information, including [encryption in transit, access controls limited to authorized team members, and vendor security reviews]. No system is completely secure, so we cannot guarantee absolute security.

We keep personal information only as long as needed for the purposes in this policy and to meet legal, tax, and accounting requirements. As a general guide: donation and financial records are kept for at least seven years; Family Registry entries are kept until you ask us to remove them; marketing contacts are kept until you unsubscribe or ask us to delete them. 

9. Cookies and analytics

We use cookies and similar tools to keep our website working, remember your preferences, and understand how visitors use our site. We use [Squarespace Analytics / Google Analytics / other]. [We do not use advertising or social media tracking pixels on our website. Confirm. If you do use them, list them here and do not place them on pages that could reveal a visitor's health connection, such as the Family Registry and data collection pages, without legal advice.]

You can control cookies through your browser settings. Blocking some cookies may affect how the website works.

10. Links to other websites

Our website links to third-party sites, including RARE-X, COMBINEDBrain, Google Forms, and payment pages. We are not responsible for their privacy practices. Please review their policies before sharing information.

11. Changes to this policy

We may update this policy from time to time. We will post the updated version on this page with a new "Last updated" date and, for material changes, provide additional notice such as an email or website banner.

12. Contact us

HUWE1 Foundation PO Box 1973, Jackson, Wyoming 83001 hello@huwe1foundation.org