Policies

Effective Date: November 2024

1. Introduction

Welcome to the Rare Disease Research Network (RDRN). We are committed to protecting and respecting your privacy. This Privacy Policy explains how we collect, use, store, and safeguard your personal information when you use our website and services. By signing up and using the RDRN website, you agree to the practices described in this policy.

2. Information We Collect

We collect and process the following types of data:

  • Personal Information: When you sign up to create an account, we collect your contact details, such as your name and email address. We also collect information about your research interests as you self-declare them during registration or use of the website. Please note that we do not host, collect, or process any personal medical data. Our administrators will not approve any attempt to submit such data.
  • Automatically Collected Data: We may collect data automatically about your interactions with our website, including your IP address, browser type, access times, pages viewed, and any feedback you provide to help us improve our services and user experience.

3. How We Use Your Information

The data we collect is used for the following purposes:

  • Connecting Users: We use your contact details and research interests to connect you with relevant researchers, advocates, and other members of the RDRN community.
  • Improving Services: Data collected automatically helps us monitor and improve our website’s performance and usability.
  • Communication: We may use your contact information to send you updates, newsletters, or information related to your research interests. You can opt out of these communications at any time.
  • Data Collection for Analysis and Marketing: We collect data on overarching research themes, connections made, and research project outcomes. This information may be used in our future marketing efforts, grant proposals, and other promotional activities.

4. Data Storage and Security

Your data is stored securely on servers located in the United Kingdom and is fully compliant with the General Data Protection Regulation (GDPR). We implement robust security measures to protect your data from unauthorised access, alteration, or disclosure. We will only retain your personal data for as long as necessary to fulfil the purposes outlined in this Privacy Policy.

5. Your Data Protection Rights

As a user of our website, you have the following rights concerning your data:

  • Access: You have the right to request a copy of the personal data we hold about you.
  • Rectification: You can request that we correct any inaccuracies in the data we hold.
  • Erasure: You have the right to request the deletion of your personal data if it is no longer necessary for the purposes for which it was collected.
  • Restriction: You can ask us to restrict the processing of your data under certain conditions.
  • Objection: You have the right to object to the processing of your data in certain circumstances.
  • Data Portability: Where feasible, you can request that we transfer your data to another organisation or directly to you.

To exercise any of these rights, please contact us at [email protected].

6. Data Retention

We will only retain your personal information for as long as necessary to fulfil the purposes for which it was collected or as required by law. Once your data is no longer needed, we will securely delete or anonymise it.

7. Changes to This Privacy Policy

We may update this Privacy Policy from time to time. Any changes will be posted on this page with an updated effective date. We encourage you to review this policy periodically to stay informed about how we protect your data.

8. Contact Us

If you have any questions, concerns, or requests regarding this Privacy Policy or our data practices, please contact us at:

Email: [email protected]

We are committed to addressing your concerns and protecting your privacy.

This Privacy Policy is intended to provide transparency about our data practices and your rights. Thank you for being part of the Rare Disease Research Network.

Effective Date: November 2024

1. Introduction

The Rare Disease Research Network (RDRN) is committed to ensuring that our website and services are fully accessible to all individuals, including those with disabilities, in compliance with UK accessibility regulations and best practices. We believe in equal access to information, resources, and opportunities and strive to create an inclusive environment where all users can engage fully with our platform.

2. Legal Framework and Compliance

Our accessibility policy is guided by and adheres to the following UK laws and regulations:

  • The Equality Act 2010 requires organizations to make reasonable adjustments to ensure that people with disabilities are not placed at a substantial disadvantage compared to those without disabilities. RDRN is committed to making such adjustments to ensure that our website and services are accessible to all.
  • Public Sector Bodies (Websites and Mobile Applications) (No. 2) Accessibility Regulations 2018: While RDRN is not a public sector body, we voluntarily adhere to these standards to ensure that our website meets or exceeds the accessibility requirements set forth by UK law.
  • Web Content Accessibility Guidelines (WCAG) 2.1: Our website is designed and developed to meet at least WCAG 2.1 Level AA standards, ensuring that content is perceivable, operable, understandable, and robust for all users.

3. Accessibility Features

  • Responsive Design: Our website is designed to be fully responsive, providing an optimal user experience across different devices, including desktops, tablets, and smartphones.
  • To support a wide range of accessibility needs, RDRN is reviewing and plans to incorporate the following features:
    • Recite Me Accessibility Tool: A tool that provides various accessibility options, including:
      • Text-to-speech functionality for users who prefer or require audio content.
      • Adjustable text size, font, and colour contrast settings to cater to visual preferences and needs.
      • Screen masking features to reduce visual clutter and improve focus.
      • Enhanced keyboard navigation for users relying on assistive technologies.

4. Inclusive Staffing and PPI Practices

RDRN is committed to inclusivity in all aspects of our operations, including staffing, employment, and Patient and Public Involvement (PPI) practices:

  • Employment and Staffing: We are an equal-opportunity employer and ensure our recruitment processes are accessible. We make reasonable adjustments in the workplace to support employees with disabilities, ensuring they can perform their roles effectively.
  • Patient and Public Involvement (PPI): Our PPI practices are designed to be inclusive, enabling individuals with disabilities to participate fully in research and decision-making processes. We ensure that meetings, consultations, and other engagements are accessible and provide accommodations as needed.

5. Continuous Improvement and Feedback

We recognise that accessibility is an ongoing process and are committed to continuous improvement:

  • Feedback Mechanism: We actively seek feedback from our users to identify and address any accessibility barriers. Users can provide feedback or request assistance by contacting us at [email protected].
  • Regular Reviews: We regularly review our website and services to ensure compliance with current accessibility standards and to make necessary improvements. This includes user testing with individuals who have disabilities to ensure real-world usability.
  • Training and Awareness: We provide regular training to our staff on accessibility best practices and legal requirements, ensuring that accessibility is integrated into all aspects of our work.

6. Reporting Accessibility Issues

If you encounter any barriers or have difficulty accessing any part of our website, we encourage you to report these issues to us. We are committed to addressing and resolving accessibility concerns promptly:

Email: [email protected]

We aim to respond to all accessibility-related inquiries within ten business days.

7. Commitment to Accessibility

RDRN is committed to making our platform accessible to everyone. We recognise that accessibility is not a one-time effort but a continuous process. We will continue to evaluate and improve our accessibility practices, staying up-to-date with legal requirements and technological advancements to ensure that our platform remains inclusive for all users.

By adhering to this Accessibility Policy, the Rare Disease Research Network seeks to provide an accessible, inclusive, and supportive environment for all users, ensuring that everyone can contribute to and benefit from the advancement of rare disease research. Thank you for helping us make RDRN as accessible as possible.

Safeguarding Policy for the Rare Disease Research Network (RDRN)

Effective Date: November 2024

1. Introduction

The Rare Disease Research Network (RDRN) is dedicated to providing a safe and supportive environment for all users of our platform. As a network that connects researchers, advocates, lived experience experts, and patients, safeguarding is of utmost importance. This policy outlines our commitment to protecting the well-being of all members of the RDRN community and the procedures we have in place to ensure their safety.

2. Scope

This Safeguarding Policy applies to all users of the RDRN platform, including registered members, visitors, staff, volunteers, and third-party contributors. As RDRN is an adult-only platform, this policy specifically addresses the safeguarding needs of adults participating in our network.

3. Safeguarding Principles

RDRN is committed to the following safeguarding principles:

  • Respect and Dignity: All individuals using our platform deserve to be treated with respect and dignity. Discrimination, harassment, or abuse of any kind will not be tolerated.
  • Safety and Well-being: The safety and well-being of all users are paramount. We strive to create an environment where members can engage in research, advocacy, and discussions without fear of harm.
  • Empowerment: Users should feel empowered to make informed decisions, express their views, and take control of their participation in the network.
  • Transparency: We are transparent about our safeguarding procedures and encourage users to report any concerns or incidents that may compromise their safety or well-being.

4. Responsibilities

  • RDRN Staff and Volunteers: All RDRN staff and volunteers are responsible for understanding and adhering to this policy. They must act in a manner that promotes the safety and well-being of users and report any safeguarding concerns to the designated safeguarding officer.
  • Users: Users of the RDRN platform are expected to contribute to a safe environment by respecting others, following community guidelines, and reporting any behaviour that may be harmful or abusive.

5. Reporting and Responding to Safeguarding Concerns

We take all safeguarding concerns seriously and have established procedures for reporting and responding to them:

  • Reporting Concerns: Users can report safeguarding concerns directly to our designated safeguarding officer at [email protected]. This includes concerns about abuse, harassment, inappropriate behaviour, or any other issue that may compromise the safety of users.
  • Response: Upon receiving a report, the safeguarding officer will promptly assess the situation and take appropriate action. This may include investigating the concern, contacting relevant authorities, or taking steps to protect the individual(s) involved.
  • Confidentiality: All safeguarding reports will be handled confidentially. Information will only be shared with those who need to know to ensure the safety and well-being of the individuals involved.
  • Support: RDRN will provide appropriate support to any individual affected by a safeguarding issue, including referrals to external support services if necessary.

6. Safeguarding and Online Interactions

Given that RDRN operates primarily online, we recognise the unique safeguarding challenges associated with digital platforms:

  • Privacy Protection: Personal information shared on the platform should be limited to what is necessary for participation in research and advocacy. Users are encouraged to protect their privacy and avoid sharing sensitive information publicly.
  • Moderation: RDRN staff will monitor the platform for any content or behaviour that violates our safeguarding principles. Any content that poses a risk to users’ safety will be removed, and appropriate action will be taken against the individuals involved.
  • Education and Awareness: We will provide resources and guidance to users on how to stay safe online, including tips on recognizing and reporting harmful behaviour.

7. Training and Awareness

RDRN is committed to providing ongoing training and resources to staff, volunteers, and users to ensure that everyone understands their role in safeguarding:

  • Staff and Volunteer Training: All RDRN staff and volunteers will receive safeguarding training as part of their onboarding process and at regular intervals thereafter.
  • User Resources: We will make safeguarding information and resources readily available to users through our website and other communication channels.

8. Review and Updates

This Safeguarding Policy will be reviewed annually or more frequently if necessary to ensure it remains effective and up-to-date with best practices. Any updates will be communicated to all users.

9. Contact Information

If you have any questions about this Safeguarding Policy or need to report a safeguarding concern, please contact our designated safeguarding officer at:

Email: [email protected]

The Rare Disease Research Network is committed to maintaining a safe and supportive environment for all users. By adhering to this Safeguarding Policy, we can ensure that our platform remains a place where everyone can contribute to and benefit from the advancement of rare disease research.

 

Effective Date: November 2024

1. Introduction

The Rare Disease Research Network (RDRN) is committed to fostering a respectful, inclusive, and collaborative online environment. This Social Media Policy outlines the guidelines and expectations for our community’s engagement on social media platforms, both official RDRN accounts and personal accounts when representing or discussing RDRN. By participating in our social media activities, you agree to adhere to this policy.

2. Purpose of Social Media Use

Our use of social media aims to:

  • Raise Awareness: Share information about rare diseases, patient-initiated research, and the resources available on the RDRN platform.
  • Engage and Connect: Build a community of researchers, advocates, patients, and lived experience experts.
  • Provide Updates: Keep our community informed about events, research opportunities, and new resources available on RDRN.
  • Encourage Collaboration: Facilitate discussions and collaborations that can accelerate rare disease research.

3. Guidelines for Participation

We encourage open and respectful dialogue but require that all participants adhere to the following guidelines:

  • Respect and Courtesy: Treat all members of the community with respect. Avoid offensive, derogatory, or inflammatory language. Personal attacks, harassment, or any form of bullying will not be tolerated.
  • Accuracy and Integrity: Ensure that the information you share is accurate and truthful. Avoid spreading misinformation or unverified claims. If you are unsure about the accuracy of the information, refrain from sharing it until it is verified.
  • Privacy and Confidentiality: Do not share personal, medical, or confidential information about yourself or others. Respect the privacy of all community members and avoid disclosing any information that could identify another person without their consent.
  • Relevance: Keep posts relevant to the topics of rare disease research, advocacy, and the mission of the RDRN. Off-topic, repetitive, or disruptive content may be removed.
  • No Promotions or Solicitations: Do not use RDRN social media platforms for commercial purposes, including promoting products, services, or fundraising efforts not affiliated with RDRN.
  • Use of RDRN Branding: Do not use RDRN logos, trademarks, or branding elements without permission. When representing RDRN, ensure that your posts align with our values and mission.

4. Official RDRN Social Media Accounts

The RDRN operates official social media accounts on various platforms. These accounts are managed by the RDRN team to ensure consistent messaging and compliance with this policy. Content posted on official RDRN accounts reflects the organisation’s views and positions.

5. Personal Use of Social Media

When using personal social media accounts, RDRN members, including staff, researchers, and volunteers, should:

  • Clearly Distinguish Personal Views: Make it clear when opinions expressed are personal and not representative of RDRN.
  • Follow RDRN Guidelines: Even on personal accounts, maintain professionalism and avoid posting content that could harm RDRN’s reputation or violate this policy.
  • Consider Impact: Be mindful of how your social media activity might be perceived by the RDRN community, including potential conflicts of interest or the spread of misinformation.

6. Reporting and Enforcement

We encourage community members to report any violations of this policy to [email protected]. The RDRN team will review reported content and take appropriate action, which may include removing content, issuing warnings, or suspending or banning users from our social media platforms.

7. Amendments to This Policy

RDRN reserves the right to update or modify this Social Media Policy at any time. Any changes will be communicated through our official channels. We encourage you to review this policy regularly to stay informed about our expectations and guidelines.

8. Contact Us

If you have any questions or concerns about this Social Media Policy, please contact us at:

Email: [email protected]

This Social Media Policy is designed to ensure that the RDRN community remains a positive, safe, and productive environment for all participants. Thank you for contributing to our mission and respecting these guidelines.

Effective Date: November 2024

The Rare Disease Research Network is dedicated to fostering a collaborative, respectful, and secure environment where members of the rare disease community can come together to advance rare disease research. By adhering to these Terms and Conditions, you help ensure that our platform remains a valuable and positive resource for all users. Thank you for your cooperation and for being a part of the RDRN community.

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 should align with our mission to support patient-initiated rare disease research and research co-production. This means sharing relevant information 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]

Conclusion

The Rare Disease Research Network is dedicated to fostering a collaborative, respectful, and secure environment where members of the rare disease community can come together to advance rare disease research. By adhering to these Terms and Conditions, you help ensure that our platform remains a valuable and positive resource for all users. Thank you for your cooperation and for being a part of the RDRN community.

 

Effective Date: November 2024

1. Introduction

Welcome to the Rare Disease Research Network (RDRN) website. This Website Policy outlines the terms and conditions governing your use of our website, including information about copyright, external and inbound links, and our cookie policy. By using our website, you agree to comply with this policy.

2. 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 removed from the website or 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.

3. 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 the accuracy, legality, or content of any external website. 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.

4. 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 proper functioning of the website 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 features of the website.
  • 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.

5. 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, malicious code, or using automated systems to access the website.
  • Termination of Access: RDRN reserves the right to terminate or suspend your access to the website, without notice, for any violation of this policy or any other conduct that RDRN deems harmful to the website or other users.

6. 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 completeness, accuracy, or timeliness of the information provided. RDRN is not liable for any errors, omissions, or any outcomes related to the use of the information on our website.

7. Changes to This Policy

RDRN reserves the right to update or modify this Website Policy 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 policy.

8. Contact Information

If you have any questions or concerns about this Website Policy, please contact us at:

Email: [email protected]

Conclusion

The Rare Disease Research Network is committed to providing a safe, respectful, and legally compliant online environment for all users. By adhering to this Website Policy, we ensure that our platform remains a valuable resource for researchers, advocates, and patients alike. Thank you for your cooperation and for being a part of the RDRN community.