1. Introduction

Welcome to the Rare Disease Research Network (RDRN) member’s website. These Terms and Conditions outline the rules and expectations for using our platform. By creating an account and using the RDRN website, you agree to comply with these terms. The RDRN website connects users with researchers, advocates, lived experience experts, and other stakeholders to support patient-initiated rare disease research and research co-production.

2. Purpose of the RDRN Website

The RDRN website is designed to foster collaboration between patients, researchers, advocates, experts, and supporters in the rare disease community. Our mission is to accelerate rare disease research by facilitating connections, providing resources and mentorship, and supporting patient-initiated research efforts. By participating in RDRN, you agree to contribute to this mission respectfully and meaningfully.

3. User Eligibility and Registration

• Eligibility: The RDRN website is intended for use by individuals who are 18 years of age or older. By creating an account, you confirm that you meet this age requirement.
• Account Registration: To access certain features of the website, you must create an account by providing accurate and complete information. You are responsible for maintaining the confidentiality of your login credentials and for any activity that occurs under your account.

4. User Expectations and Conduct

By using the RDRN website, you agree to adhere to the following expectations and conduct guidelines:

• Support the Mission: Your participation in the RDRN community must align with our mission to support patient-initiated rare disease research and research co-production. This means sharing relevant information about conflicts of interest and engaging respectfully with other members.
• Understanding of the Practices of Patient-initiated, Patient-led and Co-produced Research: RDRN promotes an approach that turns research on its head, starting with the ideas of patients and patient organisations. We are not a patient recruitment platform. By joining, you commit to engaging in a network that amplifies patient voices, placing them at the forefront of research decisions.
• Appropriate Behaviour: You must treat all users respectfully and refrain from any behaviour that could be considered harassing, abusive, discriminatory, or otherwise inappropriate. Inappropriate behaviour will not be tolerated and may result in the suspension or termination of your account.
• No Sharing of Personal Medical Data: To protect your privacy and the privacy of others, you must not share personal medical data on the RDRN website. This includes but is not limited to, medical records, diagnoses, treatment details, and other sensitive personal information. The RDRN website is not a platform for sharing medical data, and the administrators will remove any such information.
• Respect for Intellectual Property: You must respect the intellectual property rights of others. Do not post content that you do not have the right to share or that infringes on the copyrights, trademarks, or other intellectual property rights of others.

5. Prohibited Activities

The following activities are strictly prohibited on the RDRN website:

• Harassment and Abuse: Engaging in harassment, threats, or abusive behaviour toward other users.
• Sharing Personal Medical Data: Posting or sharing personal medical data, including your own or others.
• Seeking Medical Advice or Treatment: The platform should not be used to seek medical advice, consultations, or treatment from healthcare professionals.
• Unauthorised Access: Attempting to gain unauthorised access to the website, other users’ accounts, or RDRN’s systems.
• Misrepresentation: Impersonating another person, misrepresenting your identity, or providing false information.

6. Account Suspension and Termination

RDRN reserves the right to suspend or terminate your account at any time if you violate these Terms and Conditions or engage in any behaviour deemed harmful by our administrators to the RDRN community or its mission. In such cases, you will be notified of the suspension or termination, and any content you have posted may be removed from the website.

7. Privacy and Data Protection

RDRN is committed to protecting your privacy and complying with data protection laws, including the UK General Data Protection Regulation (GDPR). Our Privacy Policy outlines how we collect, use, and protect your personal data. By using the RDRN website, you consent to the practices described in our Privacy Policy.

8. Disclaimer of Warranties and Limitation of Liability

RDRN strives to ensure that the information on our website is accurate and up-to-date. However, we do not guarantee the information’s completeness, accuracy, or timeliness. RDRN is not liable for any errors, omissions, or any outcomes related to the use of the information on our website.

• No Warranties: The RDRN website is provided on an “as-is” and “as available” basis. RDRN makes no express or implied warranties regarding the website’s operation, content, or availability.
• Limitation of Liability: To the fullest extent permitted by law, RDRN shall not be liable for any direct, indirect, incidental, consequential, or punitive damages arising from your use of the website, including but not limited to any errors, inaccuracies, or interruptions in service.

9. Copyright and Intellectual Property

• Ownership: All content on the RDRN website, including text, graphics, logos, images, videos, and other materials, is the property of RDRN or its content suppliers and is protected by UK and international copyright laws. This content may not be reproduced, distributed, modified, transmitted, or used without the express written permission of RDRN.
• Research Ideas: Research ideas suggested by members of the platform are owned by the individual or organisation that proposed them. These ideas may not be used in research or elsewhere without the express written consent of the original suggester.
• Permitted Use: You are permitted to use the content on our website for personal, non-commercial purposes. Any other use, including the reproduction, distribution, or modification of the content, is strictly prohibited unless prior written consent has been obtained from RDRN.
• User-Generated Content: If you submit any content to the RDRN website (e.g., feedback, resources, or other user-generated materials), you grant RDRN a non-exclusive, royalty-free, perpetual, and worldwide license to use, reproduce, modify, publish, and distribute such content in any media. This excludes research ideas as aforementioned under permitted use.

10. External and Inbound Links

• External Links: The RDRN website may contain links to external websites operated by third parties. These links are provided for your convenience and do not constitute an endorsement by RDRN of the content, products, services, or viewpoints expressed on those websites. RDRN is not responsible for any external website’s accuracy, legality, or content. Users are encouraged to review the privacy policies and terms of use of any external sites they visit.
• Inbound Links: You may create links to the RDRN website from your own website, provided that the link does not portray RDRN or its services in a false, misleading, derogatory, or otherwise offensive manner. RDRN reserves the right to request the removal of any inbound link that violates this policy. You may not use RDRN’s logo or other proprietary graphics to link to our website without express written permission.

11. Cookie Policy

• Use of Cookies: The RDRN website uses cookies to enhance your browsing experience, analyse website traffic, and personalise content. Cookies are small text files stored on your device when you visit our website.
• Types of Cookies: We use the following types of cookies:
  • Essential Cookies: These cookies are necessary for the website’s proper functioning and cannot be disabled.
  • Performance Cookies: These cookies collect information about how visitors use the website, allowing us to improve the website’s performance.
  • Functionality Cookies: These cookies remember your preferences and settings to provide a more personalised experience.
  • Targeting Cookies: These cookies are used to deliver relevant advertisements and track the effectiveness of marketing campaigns.
• Managing Cookies: You can control and manage cookies through your browser settings. You may choose to block or delete cookies, but doing so may affect your ability to access certain website features.
• Consent: By using the RDRN website, you consent to the use of cookies by this policy. A cookie consent banner is displayed when you first visit our website, allowing you to accept or manage your cookie preferences.

12. Website Use and Security

• User Accounts: Users who create an account on the RDRN website are responsible for maintaining the confidentiality of their login credentials. You agree to notify RDRN immediately of any unauthorised use of your account or any other breach of security.
• Prohibited Activities: You agree not to engage in any activity that could harm the website, interfere with its operation, or attempt to gain unauthorised access to our systems. This includes but is not limited to, introducing viruses or malicious code or using automated systems to access the website.
• Termination of Access: RDRN reserves the right to terminate or suspend your website access without notice for violating this policy or any other conduct that RDRN deems harmful to the website or other users.

13. Changes to These Terms and Conditions

RDRN reserves the right to update or modify these Terms and Conditions at any time. Any changes will be posted on this page with an updated effective date. Your continued use of the website after any changes constitutes your acceptance of the revised terms.

14. Contact Information

If you have any questions or concerns about these Terms and Conditions, please contact us at:

Email: [email protected]

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