ABOUT RARE DISEASE CONNECT

Rare Disease Connect (RDC) is a platform operated by Rare Disease Connect LLC, a company registered in Delaware, United States. RDC connects people affected by rare diseases and conditions with studies run by sponsors and research teams.

Through the Website you can:

Read information about rare diseases and about taking part in research

Register your interest in research relevant to your condition

Sign up to receive updates about a particular condition

RDC also provides information for researchers, research organizations and study sponsors.

The Website is available worldwide. RDC is registered in the United States, and the laws that apply to your use of the Website may differ depending on where you live.

ELIGIBILITY AND AGE RESTRICTIONS

RDC is intended for users who are 16 years of age or older. By accessing or using the Website, you represent and warrant that you are at least 16 years old.

If you are a parent, carer or family member of someone with a rare disease or condition, you can register your own interest in that condition. We do not ask for any information about the person you care for.

If you believe a person under 16 has provided information through RDC, please contact us using the details in Section 16.

USE OF THE WEBSITE

You agree to use RDC only for lawful purposes and in accordance with these Terms of Use. You acknowledge your responsibility for ensuring that your use complies with all applicable laws, regulations, and these Terms.

You agree not to:

Use the Website for any unlawful, unauthorized, fraudulent, or harmful purpose

Attempt to gain unauthorized access to the Website, its systems, databases, or user information

Interfere with, disrupt, or damage the operation, performance, or security of the Website

Copy, reproduce, distribute, publicly display, or commercially exploit RDC content without prior written permission

Use information obtained through the Website to harm, harass, threaten, intimidate, defame, or target another person

Employ automated systems, bots, scrapers, crawlers, or other tools to systematically collect, extract, or scrape information from the Website without RDC’s prior written permission

Reverse engineer, decompile, or attempt to discover the underlying code or structure of the Website

Impersonate another person or misrepresent your identity or affiliation

Spam, flood, or send unsolicited messages to RDC or other users

HEALTH AND MEDICAL INFORMATION DISCLAIMER

The information provided on RDC is intended for general educational and informational purposes only. It is not medical advice and should not be used as a substitute for professional consultation with a qualified healthcare professional.

RDC does not provide medical diagnosis, treatment recommendations, or medical advice through the Website. Users should not rely on information from RDC as a basis for medical decisions without consulting with an appropriately qualified healthcare professional.

RDC strongly encourages users to:

Consult with their healthcare provider before making any health-related decisions

Seek professional medical advice regarding their individual health, diagnosis, treatment options, or medical concerns

Contact emergency services or appropriate healthcare providers in urgent or emergency medical situations

RDC is not liable for decisions made based on information available through the Website, nor is RDC responsible for outcomes resulting from medical choices made by users or their healthcare providers.

RESEARCH STUDIES AND PARTICIPATION

RDC provides information about research studies run by sponsors, research organizations, academic institutions and other third parties (collectively, “Research Studies”).

You may register your interest in taking part in Research Studies. Registration of interest is voluntary and does not constitute an application or enrollment.

Important Limitations:

Registering your interest does not guarantee eligibility, selection or participation in any study

Eligibility is determined according to the criteria set for each study

RDC does not guarantee that a particular Research Study will remain available or continue to accept participants

The conduct of any Research Study is the responsibility of the research organization or study sponsor

Taking part in any study requires a separate informed consent process, completed before participation begins.

UPDATES AND COMMUNICATIONS

If you register through the participate in research form, we contact you about research opportunities relevant to the condition you registered. You can ask us to stop at any time using the details in Section 16.

Each disease hub has its own newsletter. You may subscribe to receive updates about that disease, and you may separately ask to be contacted about research opportunities relating to it. You can unsubscribe at any time using the link in any email we send you.

You receive only the communications you have asked for.

Communications that confirm something you have done, such as a registration confirmation, are not subject to unsubscribe requests.

INTELLECTUAL PROPERTY RIGHTS

RDC Website Content and Ownership:

Unless otherwise indicated, the RDC Website and all its content, including its name, logo, branding, text, graphics, images, design, layout, and other materials, are owned by or licensed to RDC and are protected by United States and international intellectual property laws, including copyright, trademark, and design protection laws.

Permitted Use:

You may read the Website and use the information on it for your own purposes, subject to the restrictions below.

Prohibited Use:

You may not, without prior written permission from RDC:

Reproduce, modify, adapt, or create derivative works based on RDC content

Distribute, publish, sell, sublicense, or commercially exploit RDC content

Remove or alter any copyright, trademark, or proprietary notices

Use RDC content in any manner that infringes RDC’s intellectual property rights or the rights of third parties

THIRD-PARTY WEBSITES AND SERVICES

RDC may provide links to third-party websites, research organizations, educational resources, or other external websites and services for your convenience and reference.

Disclaimer:

RDC does not control, endorse, monitor, or assume responsibility for third-party websites or their content

RDC is not responsible for the accuracy, completeness, legality, or appropriateness of third-party website content

RDC is not responsible for third-party privacy practices, data security, terms of service, or other policies

Links do not imply endorsement or approval of third-party websites or services

Your Responsibility:

Before using any third-party website or providing information to a third party, you should:

Review their terms of use and privacy policy

Assess their credibility and legitimacy

Understand your rights and obligations

Evaluate their security and data protection practices

RDC is not responsible for your interactions with third parties or losses or damages arising from third-party websites or services.

ACCURACY OF INFORMATION

RDC aims to provide accurate, useful, and current information. However, RDC does not guarantee that all information on the Website will always be:

Complete or comprehensive

Current or up-to-date

Error-free or free from inaccuracies

Suitable for your specific circumstances

Information Changes:

Information about Research Studies, treatments, and medical knowledge changes over time

RDC may update, modify, correct, or remove content at any time without notice

Users are responsible for verifying information and seeking professional guidance

You acknowledge that you use RDC information at your own risk and should not rely solely on Website content for health or medical decisions.

PRIVACY

Your use of the Website involves the collection and processing of personal information. What RDC collects, why, how long it is kept, and the rights you have over it are set out in the RDC Privacy Policy at https://rarediseaseconnect.com/privacy-policy/.

DATA SECURITY

RDC implements appropriate technical and organizational measures to protect personal information. How RDC handles personal information, including in the event of a security incident, is set out in the RDC Privacy Policy.

WEBSITE AVAILABILITY AND SERVICE LIMITATIONS

RDC aims to maintain the Website and keep it available and functioning properly. However, RDC does not guarantee:

Uninterrupted or error-free access

That the Website will be available at all times

That features or content will work as expected

Maintenance and Service Disruptions:

RDC may temporarily:

Suspend or restrict access to the Website for maintenance, updates, repairs, or improvements

Take the Website offline for security patches or emergency repairs

Modify features, content, or functionality

Experience technical issues or service interruptions

RDC will attempt to provide advance notice of planned maintenance when possible, but does not guarantee notice for emergency repairs or security-related shutdowns.

Limitation of Liability:

RDC is not liable for losses or damages arising from:

Temporary unavailability or downtime of the Website

Loss of access to information or services

Interruption of services for maintenance or updates

Technical errors or glitches

LIMITATION OF LIABILITY

To the maximum extent permitted by applicable law, RDC will not be responsible or liable for:

Direct or Indirect Damages:

Direct, indirect, incidental, consequential, special, or punitive damages

Loss of profits, revenue, data, use, or opportunity

Business interruption or lost business opportunity

Specific Disclaimers:

Reliance on information or content provided through the Website

Medical or health-related decisions or outcomes based on Website information

Participation, attempted participation, or non-participation in Research Studies

Eligibility determinations or selection decisions made by research organizations

Content, practices, or conduct of third-party websites or organizations

Unauthorized access or data breaches (except where RDC’s negligence or willful misconduct caused the breach)

No Waiver:

Nothing in these Terms of Use excludes or limits RDC’s liability for:

Losses or damages that cannot legally be excluded or limited under applicable law

Death or personal injury caused by RDC’s negligence

Fraud or fraudulent misrepresentation

Gross negligence or willful misconduct

Applicable Jurisdiction:

The limitations and disclaimers in this section apply to the maximum extent permitted under United States federal law and the laws of the State of Delaware.

CHANGES TO THESE TERMS

​RDC may update, modify, or revise these Terms of Use at any time to reflect changes in legal requirements, business practices, or Website features.

Notice of Changes:

Updated Terms will be published on this page with a revised “Last Updated” date

RDC may notify users of material changes via email or prominent notice on the Website

Material changes may take effect immediately or after a notice period, as determined by RDC

Your Acceptance:

Your continued use of RDC after changes are published constitutes your acceptance of the updated Terms of Use. If you do not agree with changes, you should stop using the Website.

If you have concerns about changes to these Terms, please contact RDC as described in Section 16.

GOVERNING LAW AND DISPUTE RESOLUTION

Governing Law:

These Terms of Use are governed by and construed in accordance with the laws of the United States and the State of Delaware, without regard to its conflict of law principles.

Jurisdiction and Venue:

You agree that any legal action, suit or proceeding arising out of or relating to these Terms of Use or your use of the Website shall be brought exclusively in the state or federal courts located in the State of Delaware. You consent to the personal jurisdiction of these courts and waive any objection to venue.

This does not affect rights you have under the law of the country where you live. If you are a consumer, nothing in these Terms of Use removes your statutory rights, and you may be able to bring proceedings in your own country.

Dispute Resolution:

Before pursuing formal legal action, you agree to attempt to resolve disputes through good faith communication with RDC. Please contact RDC as described in Section 16 to discuss any concerns or disputes.

CONTACT US

​If you have questions, concerns, or feedback regarding these Terms of Use, the RDC Website, or your use of RDC, please contact us:

Email: privacy@rarediseaseconnect.com

Website: https://rarediseaseconnect.com

Mailing Address: 8 The Green, Ste B, Dover, DE 19901

We will respond to inquiries and address concerns within a reasonable timeframe.

SEVERABILITY

If any provision of these Terms of Use is found to be invalid, illegal, or unenforceable by a court of competent jurisdiction, that provision will be modified to the minimum extent necessary to make it enforceable, or if that is not possible, the provision will be severed. All other provisions will remain in full force and effect.

ENTIRE AGREEMENT

These Terms of Use, together with the RDC Privacy Policy and any other policies referenced herein, constitute the entire agreement between you and RDC regarding your use of the Website and supersede all prior agreements, understandings, and negotiations.