Terms of Use

2.1 Age Requirement

You must be at least 18 years of age to register an account or use the Platform. By creating an account, you confirm that you meet this requirement.

2.2 Patient Profile Registration

Only individuals who are the legal guardian of a GNAO1-diagnosed patient may register a patient profile on their behalf. By completing the patient profile registration, you confirm — via the acknowledgment checkbox provided — that you hold legal guardianship of the patient whose information you are submitting.

2.3 General Users

Registration is open to adults including, but not limited to, parents, guardians, medical professionals, researchers, and writers with a genuine interest in GNAO1-related conditions. MyGNAO1 reserves the right to suspend or remove accounts that do not reflect legitimate or authentic use.

3.1 Purpose

MyGNAO1 is a community support and information-sharing platform. It is designed to help families connect, share experiences, and access information related to GNAO1-related disorders.

3.2 Not a Medical Provider

MyGNAO1 is not a medical provider, healthcare institution, or clinical service. Nothing on this Platform constitutes medical advice, diagnosis, or treatment. The information shared by users, contributors, or published in the GNAO1 Library is for informational and community support purposes only.

3.3 Consult a Professional

For any questions or concerns regarding a medical condition, always seek the guidance of your physician or a qualified healthcare provider. Do not disregard or delay seeking professional medical advice based on anything you read or encounter on this Platform.

4.1 Account Responsibility

You are responsible for maintaining the confidentiality of your account credentials. You are responsible for all activity that occurs under your account.

4.2 Accurate Information

You agree to provide accurate, current, and authentic information when registering an account or submitting any form on the Platform, including contributor access requests.

4.3 Account Suspension and Termination

MyGNAO1 reserves the right to suspend or block any account at its sole discretion, including but not limited to cases of abuse, misuse, violation of these Terms, or behavior that is harmful to the community. We are not obligated to provide justification for such action.

4.4 Account Deletion

Account deletion is not currently supported. When this feature becomes available, deleting your account will result in the permanent deletion of all associated data, including patient profiles, care updates, and submitted content. You will be notified of this process when the feature is introduced.

5.1 Optional Data Entry

Submitting information to the Platform, including patient profiles, care updates, and treatment experiences, is entirely optional. You are never required to provide any specific information.

5.2 Visibility Controls

You control the visibility of your patient profile and associated data. Options include private, community-level, and public visibility. These settings are reversible at any time.

5.3 Community Map

Registering a patient profile will result in that patient being counted anonymously in the Community Map. By default, only a numerical count is reflected. The display of country-level information is subject to your visibility settings.

5.4 Data Storage

All data submitted to the Platform is stored on secure servers located in AWS US-EAST-1 (United States). Data is not exported, sold, or transferred to third parties outside of the conditions described in these Terms and our Privacy Policy.

5.5 Research Participation (Phase 2)

In a future phase of the Platform, registered guardians may be given the option to share their patient's experiences and care data with researchers. This participation is strictly opt-in and requires explicit consent from the guardian. Consent may be withdrawn at any time without consequence. No patient data will be shared with researchers without prior guardian agreement.

6.1 Ownership

You retain ownership of the content you submit to the Platform, including patient stories, care updates, and treatment experiences.

6.2 License to MyGNAO1

By submitting content, you grant MyGNAO1 a non-exclusive, royalty-free license to display, store, and — where you have consented — share your content in anonymized or aggregated form for community and research purposes, as described in Section 5.5.

6.3 Content Standards

You agree not to submit content that is false, misleading, harmful, abusive, or in violation of any applicable law. You agree not to use the Platform to provide or solicit medical advice.

6.4 Moderation

MyGNAO1 reserves the right to remove any content that violates these Terms or is deemed harmful to the community, without prior notice.

7.1 Independent Contributors

Articles published in the GNAO1 Library are authored by independent, voluntary contributors. They represent the personal findings, perspectives, and beliefs of their respective authors.

7.2 No Liability for Published Content

While MyGNAO1 endeavors to maintain a standard of quality and accuracy in published articles, we do not guarantee the completeness, accuracy, or reliability of any content in the Library. MyGNAO1 does not bear liability for the content of independently authored articles.

7.3 Not Medical Advice

All Library content is informational only and does not constitute medical advice. Refer to Section 3 of these Terms.

8.1 Application Process

Users may apply for Contributor (Editor) access through the designated request form. All information submitted must be valid and authentic.

8.2 Approval Discretion

Contributor access requests are subject to review and approval by the MyGNAO1 management team. We reserve the right to approve or decline any request without obligation to provide justification.

8.3 Processing Time

We aim to process contributor access requests within 3 to 5 business days. This timeline is indicative and does not constitute a legal commitment.

8.4 Access Revocation

MyGNAO1 reserves the right to revoke contributor access at any time and without prior notice. Contributors whose access is revoked will revert to standard user status.

9.1 Platform Ownership

All concepts, features, technologies, and designs developed by the MyGNAO1 team — including but not limited to the Community Map, GNAO1 Library, patient profile system, and care update system — are the intellectual property of MyGNAO1 and are protected under applicable copyright and intellectual property laws.

9.2 External Links and Resources

MyGNAO1 does not own, control, or bear responsibility for any external links, third-party websites, or support groups referenced or shared on the Platform. These are provided as a convenience and do not constitute endorsement.

9.3 Prohibited Use

You may not copy, reproduce, distribute, or create derivative works from any MyGNAO1 intellectual property without prior written permission.