Terms of Use

Welcome to My Rare Journey. This page explains our terms of use, which contain important information about your legal rights and responsibilities. When you use My Rare Journey, you’re agreeing to these terms.

These Terms of Use (“Terms”) are an agreement between you and OpalMedica Ltd (“OpalMedica”), a company registered in the United Kingdom. References to “OpalMedica”, “us”, “we” and “our” mean OpalMedica Ltd. “My Rare Journey” is an online service provided by OpalMedica via mobile applications and a web-based application.

These terms govern our relationship with you (“users”) and others who interact with My Rare Journey (the “Services”). By using or accessing the Services, you’re agreeing to these Terms. If you’re using the Services for an organisation, you’re agreeing to these Terms on behalf of that organisation, and you represent and warrant that you can do so. If you do not accept these Terms, do not create an account or use the Services.

Please read the Terms carefully. We’ve tried to make the Terms fair and straightforward, but feel free to contact us at support@opalmedica.co.uk if you have any questions or suggestions.

1. Complaints

Should you have any complaints or concerns regarding the application or its use please contact us at support@opalmedica.co.uk and we will respond within 24 hours.

Privacy

We value your privacy. The OpalMedica Privacy Notice outlines important information about how we collect, use and share your content and personal information. We encourage you to read the Privacy Notice, and to use it to help you make informed decisions.

2. Your Account

Make sure your account information is accurate and that you keep your account safe. You will follow our rules and the law. If you’re under the age of 16, you may need parental consent to use our services.

To use our Services, you must first create an account (“Account”). You agree to:

1. try to choose a strong and secure password of at least 8 characters;
2. keep your password secure and confidential; and
3. follow the law and our list of Dos and Don’ts.

You are responsible for anything that happens through your account unless you close it or report misuse.

If you’re under the age of 16, depending on where you live, you may need to have your parent or guardian’s consent to this Agreement and enter into this Agreement on your behalf.

3. Your Content

When you create or post content on an OpalMedica service, you still own it. You do, however, give us permission to use it in ways necessary to provide, improve, promote and protect our services. If content includes personal information, it is subject to our Privacy Notice.

In addition:

• When you use an application, the application may ask for your permission to access your content and information as well as content and information that others have shared with you. We require applications to respect your privacy in accordance with our Privacy Notice, and your agreement with that application will control how the application can use, store, and transfer that content and information.
• When you publish content or information within My Rare Journey, it means that you are allowing people on My Rare Journey to access and use that information, and to associate it with you (i.e., your name and profile picture).

You and OpalMedica agree that we may access, store, process and use any content, information and personal data that you provide in accordance with the terms of the Privacy Policy. This includes protecting and improving our Services through analysis of your use of the Services, and/or analysis of your personal information in anonymised, pseudonymised, de-personalised and/or aggregated form. It also includes using your data (such as survey responses) to inform the development of primary care clinical decision aid tools, and license your data to third parties for use in rare disease research.

4. Dos and Don’ts

You’re responsible for the content you create or post on My Rare Journey. We respect other people’s rights, and expect you to do the same. We ask that you follow our rules and don’t do anything illegal with the Services.

We do our best to keep My Rare Journey safe, but we cannot guarantee it. To ensure My Rare Journey remains safe for all users, you agree to the following Dos and Don’ts:

Dos

You agree that you will:

• Only use content you’re allowed to use; that is, you own all rights to your content or otherwise have (and will continue to have) all rights and permissions to legally use, share, display, transfer and license your content via the Services and in the manner required by these Terms.
• Comply with all applicable laws, including, without limitation, privacy laws, intellectual property laws, anti-spam laws, export control laws, tax laws, and regulatory requirements.
• Provide accurate information to us and keep it updated.
• Immediately notify us of any actual or suspected loss, theft or unauthorised use of your account or access codes.
• Use the Services in a way consistent with these Terms.

Don’ts

You agree that you will not:

• Provide any false personal information, including your age, on My Rare Journey, or create an account for anyone other than yourself without permission.
• Share your password, let anyone else access your account, or do anything else that might jeopardise the security of your account.
• Create more than one personal account, with the exception of people or businesses that are expressly authorised to create accounts on behalf of their employers or clients.
• Solicit login information or access an account belonging to someone else.
• Collect users’ content or information, or otherwise access My Rare Journey, using automated means (such as harvesting bots, robots, spiders, or scrapers) without our prior permission.
• Post content or take any action on My Rare Journey that infringes or violates someone else’s rights or otherwise violates the law.
• Post content that: is hate speech, threatening, or pornographic; incites violence; or contains gratuitous nudity or violence.
• Send age-inappropriate, indecent or otherwise offensive communications to users under the age of 18.
• Engage in cyber-bullying, that is, communications that seek to harass, humiliate, embarrass, torment, threaten, pick on or intimidate another person. Examples of cyber bullying can include (but are not limited to) flaming (repeated negative messages), sexual and racist harassment, denigration, impersonation, trickery, exclusion and cyber stalking.
• Use your account primarily for your own commercial gain.
• Use My Rare Journey if you are a convicted sex offender.
• Post unauthorised commercial communications (such as spam) on My Rare Journey.
• Upload viruses or other malicious code.
• Use My Rare Journey to do anything unlawful, misleading, malicious, or discriminatory.
• Do anything that could disable, overburden, or impair the proper working or appearance of My Rare Journey, such as a denial of service attack or interference with page rendering or other My Rare Journey functionality.
• Facilitate or encourage any violations of these Terms or our policies.

5. Limits

To operate effectively and protect the security and integrity of My Rare Journey, we need to maintain control over what happens on our Services.

OpalMedica reserves the right to limit your use of the Services, including the rights to restrict, suspend, or terminate your account if we believe you may be in breach of this Agreement or law or are misusing the Services (e.g., violating any of the Dos and Don’ts). We can also remove any content or information you post on My Rare Journey if we believe it violates these Terms.

6. Intellectual Property Rights

You should be aware of our and others’ intellectual property rights. OpalMedica reserves all of its intellectual property rights, including patents, copyrights, design rights, trade marks, service marks, trade secrets, know-how, database rights and other rights in the nature of intellectual property rights (whether registered or not) and all applications for the same which may now or in the future subsist anywhere in the world, including the right to sue for and recover damages for past infringements, where we are the owner. Trademarks and logos used in connection with the Services are the trademarks of their respective owners.

Using the Services does not give you any ownership in our Services or the content or information made available through our Services. In addition:

• If we remove your content for infringing someone else’s copyright, and you believe we removed it by mistake, we will provide you with an opportunity to appeal.
• If you repeatedly infringe other people’s intellectual property rights, we will disable your account when appropriate.
• You will not use our copyrights or Trademarks or any confusingly similar marks, unless you have our prior written permission to do so.
• You will not modify, create derivative works of, decompile, or otherwise attempt to extract source code from us, unless you are expressly permitted to do so under an open-source licence, or we give you express written permission.

7. Third-Party Services and Sites

If you use or connect another service on or to My Rare Journey, or follow a link to another site, what happens is between you and them. We’re not responsible for it or what either of you do.

The Services are integrated with various third party services and applications (collectively, “Third Party Services”) that may make available to you their content and products. Examples of Third Party Services include social media platforms and other integration partners and service providers. These Third Party Services may have their own terms and policies, and your use of them will be governed by those terms and policies. We don’t control Third Party Services, and we’re not liable for Third Party Services or for any transaction you may enter into with them, or for what they do. Your security when using Third Party Services is your responsibility. You also agree that we may, at any time and in our sole discretion, and without any notice to you, suspend, disable access to or remove any Third Party Services. We’re not liable to you for any such suspension, disabling or removal, including without limitation for any loss of profits, revenue, data, goodwill or other intangible losses you may experience as a result (except where prohibited by applicable law).

The Services may also contain links to third party sites. When you access third party sites, you do so at your own risk. We don’t control and aren’t liable for those sites and what those third parties do.

8. Changes

We may modify these Terms or our Privacy Policy from time to time. If we make material changes, we will provide you notice through our Services, or by other means, to provide you the opportunity to review the changes before they become effective. We agree that changes cannot be retroactive. If you object to any changes, you may close your account. Your continued use of our Services after we publish or send a notice about our changes to these Terms means that you are consenting to the updated terms.

9. Termination

Either of us can end this agreement at any time. If you violate the letter or spirit of these Terms, or otherwise create risk or possible legal exposure for us, we can stop providing all or part of our services to you. We will notify you by email or at the next time you attempt to access your account. You may also close your account or disable your application at any time.

10. Disputes

In the unlikely event a legal dispute arises, OpalMedica and you agree to first attempt to resolve the matter informally.

All formal disputes shall be resolved in accordance with the procedure set out below, governed by the laws of England and Wales. Where a dispute arises out of or relates to these Terms, neither party shall commence any legal proceedings in respect of the dispute unless the provisions of this clause have been complied with (save where urgent interim relief is sought):

• Notice: A party claiming that a dispute (“Dispute”) has arisen under the Terms shall provide written notice to the other party, setting out the nature of the Dispute, the desired outcome, and the steps required to resolve the Dispute.
• Negotiation: Upon receipt of such notice, the parties shall endeavour, in good faith, to resolve the Dispute expeditiously by way of negotiation or such other means as the parties may mutually agree, within 30 days of the date of the notice.
• Mediation: If, for whatever reason, the Dispute remains unresolved 30 days after the date of the notice, the parties shall either agree upon the appointment of a mediator, or request that an appropriate mediator be appointed by the Centre for Effective Dispute Resolution (“CEDR”) or its nominee.
• Costs: The parties shall bear equally the fees and reasonable expenses of the mediator and the costs of the venue for the mediation, and shall each bear their own costs in connection with the mediation.
• Venue: The mediation shall be held in London, England.
• Confidentiality: All communications made between the parties in the course of negotiations arising out of and in connection with this dispute resolution clause shall be confidential and, to the extent permitted by law, shall be treated as communications made on a “without prejudice” basis for the purposes of the applicable rules of evidence.
• Termination of Mediation: If, after a period of two weeks from the commencement of the mediation, the Dispute has not been resolved, either party may request that the mediator terminate the mediation, and the mediator shall do so accordingly.

11. Governing Law

These Terms are governed by the laws of England and Wales. The parties irrevocably submit to the exclusive jurisdiction of the courts of England and Wales. Any dispute, controversy, proceeding or claim of whatever nature arising out of or in any way relating to the Terms and the rights created hereby shall be governed, interpreted and construed by, under and pursuant to the laws of England and Wales. The validity of this governing law clause is not contested. The Terms shall be binding to the benefit of the parties hereto and their successors and assigns.

12. Special Provisions for International Users

We strive to create a global community with consistent standards for everyone, but we also strive to respect local laws. The following provisions apply to users and non-users who interact with My Rare Journey outside of the United Kingdom:

• You consent to having your personal data transferred to and processed in the United Kingdom.
• If you are located in a country embargoed by the United Kingdom, or are on the U.S. Treasury Department’s list of Specially Designated Nationals, you will not engage in commercial activities on My Rare Journey (such as advertising). You will not use My Rare Journey if you are prohibited from receiving products, services, or software originating from the United Kingdom.

13. Definitions

We clarify the meanings of certain phrases used in the Terms:

• By “OpalMedica” or “OpalMedica Services” or “Services” or “My Rare Journey” we mean the features and services we make available; (b) our platform; (c) social plugins and (d) other media, brands, products, services, software (such as a toolbar), devices, or networks now existing or later developed. OpalMedica reserves the right to designate, in its sole discretion, that certain of our brands, products, or services are governed by separate terms and not these Terms.
• By “platform” we mean the My Rare Journey mobile and web-based applications that enable others, including users, to retrieve information from OpalMedica or provide data to us.
• By “information” we mean facts and other information about you, including actions taken by users and non-users who interact with My Rare Journey.
• By “content” we mean anything you or other users post, provide or share using OpalMedica Services.
• By “data” or “user data” or “user’s data” we mean any data, including a user’s content or information that you or third parties can retrieve from My Rare Journey or provide to My Rare Journey through Platform.
• By “post” we mean post on My Rare Journey or otherwise make available by using My Rare Journey.
• By “use” we mean use, run, copy, publicly perform or display, distribute, modify, translate, and create derivative works of.
• By “user” we mean any person or entity who actually uses our Services.

14. Additional Terms

These Terms constitute the whole agreement between us regarding your use of OpalMedica Services. There are also some important details about the Terms you should know:

• These Terms make up the entire agreement between the parties regarding My Rare Journey, and supersede any prior agreements.
• If any portion of these Terms is found to be unenforceable, the remaining portion will remain in full force and effect.
• If we fail to enforce any of these Terms, it will not be considered a waiver.
• Any amendment to or waiver of these Terms must be made in writing and signed by us.
• You will not transfer any of your rights or obligations under these Terms to anyone else without our consent.
• All of our rights and obligations under these Terms are freely assignable by us in connection with a merger, acquisition, or sale of assets, or by operation of law or otherwise.
• Nothing in these Terms shall prevent us from complying with the law.
• These Terms do not confer any third party beneficiary rights.
• We reserve all rights not expressly granted to you.
• You will comply with all applicable laws when using or accessing My Rare Journey.

By using or accessing My Rare Journey, you agree that we can collect and use such content and information in accordance with our latest Privacy Notice.

Contact

For general enquiries, contact us at support@opalmedica.co.uk.

For complaints or data protection enquiries, contact our Data Protection Officer at support@opalmedica.co.uk.