Patient Universe: Terms of Use

Effective date / last updated: 15 October 2026

1. Who we are and what these terms cover

1.1 Patient Universe is an online platform operated by Esperity BV, a Belgian private limited company (besloten vennootschap), registered office Boulevard Brand Whitlock 108, 1200 Brussels, Belgium, enterprise/VAT number BE 0848.466.027, e-mail info@esperity.com ("Esperity", "we").

1.2 These terms apply to everyone who uses patientuniverse.com and the groups hosted on it: visitors and members ("members"). One member account (one e-mail address) can be used to join several groups.

1.3 Esperity manages your platform account (e-mail address and sign-in), which you use across all groups. Each group is run either by an organisation that created it (a patient organisation or another organisation) or by Esperity (the "group operator"). Below, "the Organisation" means the group operator of the group concerned; for a group initiated by Esperity, that is Esperity.

1.3a Access to a group is set by the organisation running it. In its own organisational admin portal, it decides which accounts are admitted or excluded, which roles they have, and what content is visible to whom. It also decides how the group is moderated, may add its own community rules, and may publish its own privacy notice for the group. If the community rules conflict with these terms, these terms prevail, except where the community rules give you more protection.

1.4 The contract between Esperity and an organisation running a group, or a pharma or life-science company, for the use of the platform is separate and is not covered by these terms.

2. Who may use Patient Universe

2.1 You must be 18 or older to create an account. Accounts for people under 18 are not permitted. By creating an account you confirm that you are 18 or older. We close accounts of people under 18 when we become aware of them.

2.2 Membership of a community may require approval, an invitation, a voucher code or a check against the Organisation's membership list.

2.3 Use of Patient Universe is free of charge for visitors and members. Members never pay to use Patient Universe. Organisations may pay Esperity to run a community, which they offer to their members free of charge.

3. Your account

3.1 You sign in with a secure link sent to your e-mail address. Keep access to your e-mail account secure, and do not share sign-in links.

3.2 You may take part under a random ID instead of your name ("anonymous mode"). Anonymous mode hides your identity from other members, but the Organisation and Esperity can still link your account to your e-mail address for sign-in, safety and moderation. Do not post details that could identify you if you want to stay anonymous.

3.3 You are responsible for the information you give being accurate, and for what happens under your account.

4. No medical advice

4.1 Patient Universe is a place to share experiences, information and support. It does not provide medical advice, diagnosis or treatment, and it is not a substitute for a consultation with a doctor or other healthcare professional.

4.2 Content posted by members reflects their personal experience and may not apply to you. Educational content published by the Organisation is general information. Where an article shows "Medically reviewed by" and a review date, the review relates to that date only.

4.3 This platform cannot be used to replace medical advice or change, start or stop any treatment. Always talk to your doctor or care team before you start, stop or change a treatment. In an emergency, call 112 or your local emergency number. Do not use Patient Universe for urgent questions; messages and posts are not monitored in real time. At all times, your treating physician is your contact point for medically related questions.

4.4 The clinical trial finder shows research that may be relevant to you, based on public information. It does not mean you are eligible for a trial, and it is not a recommendation to take part. Only the study team, together with your doctor, can decide whether a trial is suitable for you.

5. Acceptable use

5.1 You agree to:

• treat others with respect, and respect their privacy;
• share your own experience, not personal medical advice presented as fact;
• respect confidentiality: do not copy or share content from private groups outside the community;
• follow the Organisation's community rules and moderators' instructions.

5.2 You must not:

• post content that is unlawful, harassing, hateful, discriminatory, threatening or sexually explicit;
• share another person's personal or health information without their permission;
• impersonate anyone, or misrepresent your connection with an organisation;
• advertise or promote medicines, medical devices, treatments, products or services, or post content on behalf of a company without the Organisation's written approval;
• recruit members for studies, surveys or commercial projects outside the platform's partner-project process;
• post links to unsafe sites, malware or spam; scrape or harvest data; try to access other accounts or non-public areas; or interfere with the platform's security or operation;
• infringe intellectual property rights.

6. Moderation and reporting

6.1 Each community is moderated by the Organisation (admins, moderators and group admins), sometimes with support from Esperity. The platform uses member flagging, a moderation queue, an automatic word filter and, if the Organisation chooses, prior approval of posts by new members.

6.2 Reporting content. Anyone can report content they consider illegal or against these terms, using the "flag" button or by e-mail to info@esperity.com. Please explain why and where the content is (exact link). We or the Organisation act on reports in a timely, diligent and objective way, and confirm receipt to the reporter.

6.3 Measures. Moderators may hide, edit, delete, pin or lock content, and warn, mute, suspend or block members. When content is removed or restricted, or an account is suspended, because it is illegal or against these terms, the member concerned receives a clear statement of reasons, unless the law prevents it. The statement explains what was done, why, and how to challenge it.

6.4 Challenging a decision. You can ask for a review of a moderation decision by writing to info@esperity.com.

6.5 Point of contact for authorities and users (Digital Services Act, Art. 11–12): info@esperity.com; languages: English, French, Dutch, Spanish.

6.6 We do not monitor all content in advance and have no general obligation to do so. We act when we become aware of illegal content.

7. Your content

7.1 You keep the rights to what you post. You give the Organisation, and Esperity as its service provider, a non-exclusive, free licence to host, store, display and adapt the format of your content within the community, only for running the community. The licence ends when the content is deleted, except for copies that others have already quoted in replies or that must be kept by law.

7.2 Your content is not used for advertising, and it is not given to sponsors or companies, unless you explicitly consent. The Organisation may use anonymous, aggregated insights from the community (for example, survey results) and decide whether to share them with partners. It never shares your identity or member lists.

8. Partner projects (advisory boards, surveys, co-creation)

8.1 The Organisation may tell you about projects run by researchers or by pharma and life-science companies, for example advisory boards or co-creation workshops. Taking part is always voluntary. You decide yourself whether to apply.

8.2 These projects are non-promotional. They run under a separate written agreement and, where you are compensated, at fair market value. Before you take part, you receive clear information about who runs the project, what data is collected, and any publication of payments required by transparency rules. You are then asked for your consent.

8.3 The company running a project is responsible for its own processing of your data for that project. It has no access to your community account or to other members' data.

9. Availability and changes to the service

9.1 We aim to keep Patient Universe available and secure, but we do not guarantee uninterrupted service. We may carry out maintenance, preferably announced in advance.

9.2 We may change features. The Organisation decides which modules are switched on in its community.

10. Liability

10.1 Esperity is liable under the applicable law for damage caused by its own fault. Nothing in these terms excludes or limits liability for death or personal injury, for fraud or intentional fault, or for gross negligence. Nor does it limit any other liability that cannot be excluded under applicable law, including your rights as a consumer.

10.2 To the extent permitted by law, Esperity is not liable for:

• content posted by members or Organisations;
• decisions you take based on content on the platform (see section 4);
• temporary unavailability caused by maintenance or events beyond our reasonable control.

11. Ending your account

11.1 You can delete your account at any time in your account settings, or by asking the Organisation or writing to info@esperity.com. Before deleting, you can download your data. After deletion, your personal data is deleted or anonymised within 30 days, as explained in the Privacy Policy.

11.2 We or the Organisation may suspend or end an account for serious or repeated breaches of these terms, with a statement of reasons (section 6.3).

11.3 If a group operator stops running a group, the group closes. Members are informed in advance and can download their data first.

12. Changes to these terms

We may change these terms, for example when the service or the law changes. We inform members of significant changes at least 30 days in advance via the platform or by e-mail. If you do not agree, you can delete your account before the change takes effect.

13. Applicable law and disputes

13.1 These terms are governed by Belgian law. If you are a consumer living in another EU country, you keep the protection of the mandatory rules of the country where you live.

13.2 The courts of Brussels have jurisdiction. If you are a consumer, you may also bring proceedings in the courts of the country where you live, and we can only bring proceedings against you there.

13.3 Before going to court, please contact us at info@esperity.com so we can try to solve the issue. For consumer disputes you can also contact the Belgian Consumer Mediation Service (Consumentenombudsdienst / Service de Médiation pour le Consommateur).

14. Language and contact

These terms are available in English, Dutch, French and Spanish. If the language versions differ, the English version prevails. Contact: Esperity BV, Boulevard Brand Whitlock 108, 1200 Brussels, Belgium · info@esperity.com.