Terms of Use

We (the folks at Rare Disease Research, LLC, or “RDR”) run a website called rarediseaseresearch.com and would love for you to use it.

By entering and using our website, you agree to these Terms of Use. If you do not agree to all the Terms of Use, then you may not access or use our website. You must be at least 18 years of age to access or use our website. We may in our sole discretion update, change or supplement our website, these Terms of Use, our Privacy Policy and our HIPAA Privacy Notice without notice.

If you find anything on rarediseaseresearch.com web page that you believe violates these Terms of Use, please contact us immediately.

1. Our Website.

We provide general information about our company Rare Disease Research, LLC on our website. Our website also provides a bit of information about rare disease research, generally, and touches on our particular focus: neurological rare disease research. We are an independent clinical research site. This means that we help researchers test and evaluate the effectiveness of prospective treatments for rare diseases. We do not sell goods or services through our website presently but may do so in the future.

While you may find general information about rare disease research on our website, we do not provide advice about the treatment of any particular disease and we do not provide medical advice. Please see your medical doctor for medical advice.

2. Privacy Policy.

Your privacy is important to us, and we will take care to protect your privacy when reasonably possible.

Please review the separate Privacy Policy posted on our website.

3. Content Posted on Other Websites.

We have not reviewed, and cannot review, all of the material, including computer software, made available through the websites and web pages to which rarediseaseresearch.com links, and that link to rarediseaseresearch.com. RDR does not have any control over those non-rarediseaseresearch.com websites and is not responsible for their contents or their use. RDR disclaims any responsibility for any harm resulting from your use of non-rarediseaseresearch.com websites and web pages.

4. Copyright Infringement and DMCA Policy.

As RDR asks others to respect its intellectual property rights, it respects the intellectual property rights of others. Although you may visit our website for reasonable purposes, you may not use our intellectual property without our written consent.

If you believe that material located on or linked to by our website violates your copyright, you are encouraged to notify RDR. RDR will respond to all such notices, including as required or appropriate by removing the infringing material or disabling all links to the infringing material. RDR will terminate a visitor’s access to and use of our website if, under appropriate circumstances, the visitor is determined to be a repeat infringer of the copyrights or other intellectual property rights of RDR or others.

If you are an intellectual property rights owner and believe that your rights have been infringed, please notify us. We will promptly evaluate notices of alleged infringement and take proper action under the Digital Millennium Copyright Act,17 U.S.C. § 512(c).

Notices of claimed copyright infringement should be sent to our Designated Agent, as follows:

Privacy Officer
Rare Disease Research, LLC
1730 NE Expressway NE
Atlanta, GA 30329
By Email: info@rarediseaseresearch.com

Please see 17 U.S.C. § 512(c)(3) for details on valid notification.

5. Intellectual Property.

This Agreement does not transfer from RDR to you any RDR or third-party intellectual property, and all right, title, and interest in and to such property will remain (as between the parties) solely with RDR. RDR, rarediseaseresearch.com, the RDR logo, and all other trademarks, service marks, graphics and logos used in connection with RDR or our Services, are trademarks or registered trademarks of RDR or RDR’s licensors. Other trademarks, service marks, graphics and logos used in connection with our services may be the trademarks of other third parties. Your use of our services grants you no right or license to reproduce or otherwise use any RDR or third-party trademarks.

6. Non-Commercial License to RDR Services

Subject to your compliance with these Terms of Use, and your payment of any applicable fees, RDR grants you a limited, non-exclusive, non-transferable, non-sublicensable license to access and make non-commercial use of our website. This license does not include any resale or commercial use of our website, or its contents. This license does not include any derivative use of our website or its contents. All rights not expressly granted to you in these Terms of Use are reserved and retained by RDR or its licensors, suppliers, publishers, rightsholders, or other content providers.

7. Changes.

We are constantly updating our website, and that means sometimes we have to change the legal terms governing use of the website. We may change our Terms of Use from time to time without notice to you. If you use our website after we have changed the Terms of Use, you are subject to the new Terms of Use.

8. Disclaimer of Warranties.

EXCEPT AS PROVIDED HEREIN THERE ARE NO WARRANTIES, EXPRESS OR IMPLIED. ALL PRODUCT IS SOLD ON AN "AS IS," "WITH FAULTS" BASIS. WE SPECIFICALLY DISCLAIM ANY WARRANTIES, AND DISCLAIM THE WARRANTIES OF MERCHANTABITY, FITNESS FOR A PARTICULAR PURPOSE AND NON-INFRINGEMENT.

WE ARE NOT LIABLE UNDER ANY CIRCUMSTANCE FOR ANY CONSEQUENTIAL OR INCIDENTAL LOSS NOR SUBSEQUENT DAMAGE OR EXPENSES RELATED TO ANY PRODUCT, SERVICES OR MATERIAL OBTAINED FROM US.

9. Limitation of Liability.

In no event will RDR, or its suppliers or licensors, be liable with respect to any subject matter of this Agreement under any contract, negligence, strict liability or other legal or equitable theory for: (i) any special, incidental or consequential damages; (ii) the cost of procurement for substitute products or services; (iii) for interruption of use or loss or corruption of data; or (iv) for any amounts that exceed the fees paid by you to RDR under this agreement during the twelve (12) month period prior to the cause of action. RDR shall have no liability for any failure or delay due to matters beyond their reasonable control. The foregoing shall not apply to the extent prohibited by applicable law.

10. Your Representations and Warranties.

You represent and warrant that (i) your use of our website will be in strict accordance with applicable law and regulations and these Terms of Use, (ii) your use of our website will not infringe or misappropriate the intellectual property rights of any third party, and (iii) you are at least 18 years of age.

11. Indemnification.

You agree to indemnify and hold harmless RDR, its contractors, and its licensors, and their respective directors, officers, employees, and agents from and against any and all claims and expenses, including attorneys’ fees, arising out of your violation of these Terms of Use.

12. Translation.

These Terms of Service were originally written in English (US). We may translate these terms into other languages. In the event of a conflict between a translated version of these Terms of Service and the English version, the English version will control.

13. Our Address.

Rare Disease Research, 1730 NE Expressway NE, Atlanta, GA 30329.

14. How to Serve a Subpoena.

If you have the subpoena to serve to RDR, please note that RDR does not accept service via e-mail or fax. All subpoenas must be properly served on us at: 1730 NE Expressway NE, Atlanta, GA 30329, Attn: Rare Disease Research, LLC – Subpoena.

15. Careers.

Our website may offer job opening information. You understand and agree that nothing on Website is an offer of employment with RDR.

16. Inquires About Participating In a Study

There are many rare diseases for which treatment is inadequate or non-existent. As part of our business, we conduct clinical studies to determine the effectiveness of various compounds and procedures to treat rare diseases. We publish on our website information about studies we are involved in or anticipate becoming involved in. Generally, Federal law and regulation govern how we conduct studies of possible treatments for rare diseases, including the Common Rule set out in 45 C.F.R. Part 46. Additionally, before a study may be conducted, it must be approved by an Independent Review Board.

If you suffer from a rare disease and are interested in becoming a participant in a study, you may contact us. Our website provides a portal for you to contact us to express your interest. We review each inquiry and endeavor to respond to all legitimate inquiries.

We will contact persons making legitimate inquiries by phone to review with you the study’s criteria and whether you qualify. Each clinical study has exceptionally specific criteria for patient inclusion and exclusion. This means, unfortunately, that some persons who would like to participate in a study do not meet the study’s scientific criteria. If you do qualify as a potential participant in a study, we will provide you with additional information about the study and its risks. In order to participate, we must usually obtain your informed, written consent.

If we contact you about a study but then later determine that you are ineligible for the study, we hold the information you provided to us for up to one year, and then delete it, unless you authorize us to retain it.

Health information that you provide us is governed by our HIPAA Privacy Notice posted on our website.

17. Miscellaneous.

This Agreement constitutes the entire agreement between RDR and you concerning the subject matter hereof, and they may only be modified by a written amendment signed by an authorized executive of RDR, or by the posting by RDR of a revised version. Except to the extent applicable law, if any, provides otherwise, this Agreement, any access to or use of our Services will be governed by the laws of the state of Georgia, U.S.A., excluding its conflict of law provisions, and the proper venue for any disputes arising out of or relating to any of the same will be the state and federal courts located in Georgia. The prevailing party in any action or proceeding to enforce this Agreement shall be entitled to costs and attorneys’ fees. If any part of this Agreement is held invalid or unenforceable, that part will be construed to reflect the parties’ original intent, and the remaining portions will remain in full force and effect. A waiver by either party of any term or condition of this Agreement or any breach thereof, in any one instance, will not waive such term or condition or any subsequent breach thereof. RDR may assign its rights under this Agreement. You may not assign rights under this Agreement without our written permission. This Agreement will be binding upon and will inure to the benefit of the parties, their successors and permitted assigns.