Effective Date: November 2024
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.
We collect and process the following types of data:
The data we collect is used for the following purposes:
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.
As a user of our website, you have the following rights concerning your data:
To exercise any of these rights, please contact us at [email protected].
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.
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.
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
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.
Our accessibility policy is guided by and adheres to the following UK laws and regulations:
RDRN is committed to inclusivity in all aspects of our operations, including staffing, employment, and Patient and Public Involvement (PPI) practices:
We recognise that accessibility is an ongoing process and are committed to continuous improvement:
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.
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
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.
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.
RDRN is committed to the following safeguarding principles:
We take all safeguarding concerns seriously and have established procedures for reporting and responding to them:
Given that RDRN operates primarily online, we recognise the unique safeguarding challenges associated with digital platforms:
RDRN is committed to providing ongoing training and resources to staff, volunteers, and users to ensure that everyone understands their role in safeguarding:
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.
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
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.
Our use of social media aims to:
We encourage open and respectful dialogue but require that all participants adhere to the following guidelines:
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.
When using personal social media accounts, RDRN members, including staff, researchers, and volunteers, should:
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.
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.
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.
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.
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.
By using the RDRN website, you agree to adhere to the following expectations and conduct guidelines:
The following activities are strictly prohibited on the RDRN website:
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.
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.
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.
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.
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
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.
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.
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.
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.