Effective Date: December 28, 2021.
IMPORTANT: RAREDISEASE.NET DOES NOT PROVIDE MEDICAL ADVICE. THE INFORMATION CONTAINED ON THIS SITE SHOULD NEVER REPLACE A DOCTOR’S ADVICE AND RECOMMENDATIONS. YOUR HEALTHCARE PROVIDER IS THE BEST RESOURCE TO CONSULT REGARDING WHAT IS BEST FOR YOU AND YOUR MEDICAL CONDITION. IF YOU HAVE AN EMERGENCY, CALL 911 OR CONTACT YOUR DOCTOR IMMEDIATELY. RELIANCE ON (A) ANY CONTENT PROVIDED BY RAREDISEASE.NET OR (B) ANY COMMENTS MADE BY USERS OF THE SITE, IS SOLELY AT YOUR OWN RISK AND IS NOT RECOMMENDED.
About the Terms
Key Terms. Terms not otherwise defined will have the following meanings:
- “Users” means any and all persons that access or use the Site. References to “access” and/or “use” of the Site (and any variations thereof) include the acts of accessing or browsing the Site.
- "User Content” refers to videos, text, photos, information and other content captured, recorded, streamed, stored, shared or otherwise made available or caused to be made available by users on or through the Site.
- “Your Content” refers to User Content that is provided or made available by you. Your Content does not include confidential account registration information.
About the Site
License to Use. Subject to your compliance with the Terms, Health Union grants you a limited non-exclusive, non-transferable, non-assignable and non-sublicensable license to access and use the Site. This license is granted for the sole purpose of enabling you to use and enjoy the benefit of the Site as provided by Health Union, in the manner permitted by the Terms. RareDisease.net is for personal use only. You may not copy, reproduce, republish, sell or otherwise profit from the information found on RareDisease.net for non-personal use or redistribute the information for non-personal use. RareDisease.net is only for individuals ages 18 years or older. If you are under the age of 18, you may only use the Site under adult supervision, in which this adult is solely responsible for your conduct on this Site.
Modifications and Updates to the Site. Health Union reserves the right, in its sole discretion, to modify or discontinue offering the Site, in whole or in part, or any features, functionality, tools or content thereof, at any time, for any reason or no reason, with or without notice to you.
International Users. The Site is controlled and operated within the United States. You are hereby prohibited from accessing or using the Site from any territory where the Site or any of the features, functionality, tools, content thereof, is illegal. If you choose to access the Site from a location outside the United States, you do so at your own risk and you are solely responsible for compliance with applicable laws, rules and regulations, including export laws and any regulations and local laws regarding online conduct and content.
No Conflict. You represent and warrant that you are not prohibited or limited in any way from accessing and using the Site by (a) any contract (e.g., employment, consulting, confidentiality, or non-disclosure agreements), (b) your current employer’s policies or codes of conduct if you are employed, (c) any similar policies or obligations that limit your conduct in any way, or (d) any rules of conduct applicable to your profession or industry or any similar laws, rules, or regulations. You confirm that you have obtained all necessary consents or waivers to access and use the Site. Notwithstanding the foregoing, we may determine your eligibility to create an account on the Site in its sole discretion.
Registration. While certain Site Content is publicly available, you must register for a User account before you are able to use all features of the Site. When you create your account, you will be asked to create a username and password, which you will be solely responsible for safeguarding. You further acknowledge and agree that you will be solely responsible for any activities or actions on or through your account, whether or not you have authorized such activities or actions. Health Union cannot and will not be liable for any loss or damage arising from your failure to comply with the above requirements.
Termination. You may cancel your account at any time. We may, in our discretion, without liability to you and without limiting our other remedies, with or without prior notice and at any time, decide to (i) limit, suspend, deactivate or cancel your account and take technical and legal steps to prevent you from using our Site at any time for any reason, and (ii) screen or delay the posting or delivery of Your Content. If your account is deactivated or cancelled, Health Union will have the right, but not the obligation to delete Your Content.
Site Content. The term “Site Content” shall mean all copyright, designs, the “look and feel” of the Site, trademarks, and all other intellectual property rights including software and all HTML and other code contained in or run by this Site and all information such as the “look and feel” of the Site, data files, graphics, text, photographs, drawings, logos, rich media, including Flash and Silverlight, images, sounds, music, video, or audio files on this Site. You acknowledge and agree that all Site Content shall remain at all times vested in Health Union and/or are the property of their respective owners. All such Site Content is protected by federal and state laws and regulations and international treaty provisions. You are permitted to use the Site Content only as expressly authorized herein by Health Union and/or its third party licensors. Any reproduction or redistribution of Site Content is prohibited and may result in civil and criminal penalties. Violators will be prosecuted to the fullest extent permissible under applicable law. Without limiting the foregoing, copying and use of the above-listed materials to any other server, location or support for publication, reproduction or distribution is expressly prohibited.
Sponsor Content. The contents, advertisements, information and other materials of any Health Union sponsor (“Sponsor”) or on any Sponsor’s website, and on all other websites under any Sponsor’s control, whether partial or otherwise, such as text, graphics, images, logos, trademarks, copyrighted material, button icons, software and other content (collectively, “Sponsor Content”) and the compilation (meaning the collection, arrangement and assembly) of all Sponsor Content, are protected by copyright, trademark and other laws. As between you and any Sponsor, all Sponsor Content is Sponsor’s exclusive property. Unauthorized use of Sponsor Content may violate copyright, trademark, and other laws. You must retain all copyright, trademark, service mark and other proprietary notices contained in Sponsor Content on any permitted copy you make of Sponsor Content. You may not sell or modify Sponsor Content or reproduce, display, publicly perform, distribute, or otherwise use Sponsor Content in any way for any public or commercial purpose, unless previously approved in writing by the Sponsor. The use of Sponsor Content on any other website for any purpose is prohibited. For sake of clarity, you are not permitted to use any Sponsor Content unless you are given express permission to do so by the Sponsor.
Your Content. By recording, uploading, streaming, sharing or storing Your Content, you hereby grant Health Union a worldwide, non-exclusive, transferable, sublicensable, royalty-free right and license to use, copy, reproduce, process, adapt, modify, distribute, post, broadcast, publicly perform, publish and display Your Content in any and all media as necessary to operate the Site. You further grant us the right to use, copy, distribute, post, broadcast, publicly perform, publish and display your username in connection with Your Content as described herein or elsewhere on the Site. Health Union does not claim any ownership rights in Your Content and nothing in the Terms will be deemed to restrict any rights that you may have to use and exploit any such content, subject only to the licenses granted to Health Union under these Terms. You acknowledge and agree that you are solely responsible for Your Content, and for any consequences thereof, including the use of Your Content by other Users.
Feedback. We welcome and encourage you to provide feedback, comments, ideas and suggestions for improvements, enhancements and modifications to the Site (“Feedback”). You may submit Feedback by e-mailing us, at email@example.com. You acknowledge and agree that all Feedback you give us (i) will be treated as non-confidential, and (ii) will be the sole and exclusive property of Health Union. Without limiting the foregoing, you acknowledge that your Feedback may be disseminated or used by Health Union or its affiliates for any purpose whatsoever, including developing, improving and marketing products. You hereby irrevocably transfer and assign to Health Union all of your right, title, and interest in and to all Feedback, including all worldwide patent, copyright, trade secret, moral and other proprietary or intellectual property rights therein, and waive any moral rights you may have in such Feedback.
Copyright Policy. If you are a copyright owner or an agent thereof and believe that any Site or User Content infringes upon your copyrights, you may submit a notification pursuant to the Digital Millennium Copyright Act (“DMCA”) by providing our Copyright Agent with the following information in writing:
- A physical or electronic signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed;
- Identification of the copyrighted work claimed to have been infringed, or if multiple copyrighted works at a single online site are covered by a single notification, a representative list of such works at that site;
- Identification of the material that is claimed to be infringing or to be the subject of infringing activity and that is to be removed or access to which is to be disabled and information reasonably sufficient to permit the service provider to locate the material;
- Information reasonably sufficient to permit the service provider to contact you, such as an address, telephone number, and, if available, an electronic mail;
- A statement that you have a good faith belief that use of the material in the manner complained of is not authorized by the copyright owner, its agent, or the law; and
- A statement that the information in the notification is accurate, and under penalty of perjury, that you are authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.
We reserve the right to remove User Content alleged to be infringing without prior notice, at our sole discretion.
If you believe that any of Your Content was improperly removed or disabled, please provide the following Counter-Notification to our Copyright Agent (see 17 U.S.C. Section 512(g) for further detail):
- your physical or electronic signature;
- a description of the materials that have been removed or to which access has been disabled and the location at which the material appeared before it was removed or access to it was disabled;
- a statement, under penalty of perjury, that you have a good faith belief that the material was removed or disabled as a result of mistake or misidentification of the material to be removed or disabled; and
- your name, address and telephone number, and a statement that you consent to the jurisdiction of the Federal District Court for the judicial district in which the address is located, and that you will accept service of process from the person who provided notification of the alleged infringement.
(See 17 U.S.C. Section 512(c)(3) for further detail about the Digital Millennium Copyright Act).
Our designated copyright agent for notice of alleged copyright infringement is:
Health Union, LLC
1218 Chestnut St. 10th Fl.
Philadelphia, PA 19113
Warranties, Disclaimers, & Limitation of Liability
Warranties by Users. You represent and warrant to Health Union that:
- you have the power and authority to accept and agree to the Terms;
- you own or control all of the rights necessary to grant the rights and licenses granted herein;
- you will not violate any federal, state or local laws, rules or regulations or infringe the rights of any third party, including, any intellectual property, privacy or publicity-related rights, in connection with Your Content or otherwise in connection with your access to or use of the Site;
- the exercise by Health Union of the rights granted by you hereunder will not cause Health Union to violate any applicable laws, rules or regulations, to infringe the rights of any third party; and
- all account information provided by you will be complete, accurate and up-to-date when provided, and updated as necessary to ensure that it remains complete, accurate and up-to-date.
Disclaimer of Warranties YOUR USE OF THE SITE AND SITE CONTENT IS AT YOUR OWN RISK. THE SITE, ALL SITE CONTENT, SERVICES, AND INFORMATION IS MADE AVAILABLE OR DISCUSSED ON OR ACCESSED THROUGH THE SITE, IS PROVIDED “AS IS,” WITHOUT WARRANTY OF ANY KIND.
HEALTH UNION MAKES NO REPRESENTATIONS OR ENDORSEMENTS ABOUT THE SUITABILITY FOR ANY PURPOSE OF PRODUCTS, SERVICES AND INFORMATION AVAILABLE THROUGH THIS SITE.
FURTHER, HEALTH UNION DISCLAIMS ALL WARRANTIES AND CONDITIONS, EITHER EXPRESS OR IMPLIED, INCLUDING, BUT NOT LIMITED TO, IMPLIED WARRANTIES OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, TITLE, AND NON-INFRINGEMENT, WITH REGARD TO THE SITE CONTENT, PRODUCTS, SERVICES AND ALL OTHER INFORMATION CONTAINED ON AND/OR MADE AVAILABLE THROUGH THIS SITE, INCLUDING BUT NOT LIMITED TO THE AVAILABILITY OF THIS SITE.
WE DO NOT GUARANTEE THE TIMELINESS, VALIDITY, COMPLETENESS OR ACCURACY OF THE SITE CONTENT. WE DO NOT WARRANT THAT THE FUNCTIONS, MATERIALS OR CONTENT ON THE SITE WILL BE UNINTERRUPTED OR ERROR-FREE. ADDITIONALLY, WE DO NOT WARRANT THAT SITE WILL REMAIN FREE OF VIRUSES OR OTHER HARMFUL COMPONENTS.
BECAUSE SOME JURISDICTIONS DO NOT ALLOW OR PERMIT THE EXCLUSION OR LIMITATION OF CERTAIN WARRANTIES; HEALTH UNION’S LIABILITY IN THESE JURISDICTIONS SHALL BE LIMITED TO THE FULLEST EXTENT PERMITTED BY LAW.
Limitation of Liability. IN NO EVENT SHALL HEALTH UNION BE LIABLE FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL OR CONSEQUENTIAL DAMAGES ARISING OUT OF OR IN ANY WAY CONNECTED WITH THE USE OF THE SITE OR WITH THE DELAY OR INABILITY TO USE SAME, OR WITH HYPERTEXT OR GRAPHIC LINKS TO THIRD PARTIES, OR FOR ANY BREACH OF SECURITY ASSOCIATED WITH THE TRANSMISSION OF SENSITIVE INFORMATION THROUGH THE SITE OR ANY LINKED SITE, OR FOR ANY INFORMATION, PRODUCTS, AND SERVICES OBTAINED THROUGH THE SITE, OR OTHERWISE ARISING OUT OF THE USE OF SAME, WHETHER BASED ON CONTRACT, TORT, STRICT LIABILITY OR OTHERWISE, EVEN IF HEALTH UNION HAS BEEN ADVISED OF THE POSSIBILITY OF DAMAGES AND EVEN IF SUCH DAMAGES RESULT FROM HEALTH UNION’S NEGLIGENCE OR GROSS NEGLIGENCE.
YOU ACKNOWLEDGE AND AGREE THAT, TO THE MAXIMUM EXTENT NOT PROHIBITED BY LAW:
- THE ENTIRE RISK ARISING OUT OF OR RELATING TO YOUR USE OF THE SITE IS AND REMAINS WITH YOU.
- WITHOUT LIMITING THE FOREGOING, HEALTH UNION DISCLAIMS ANY AND ALL LIABILITY RELATED TO (I) THE ACTS OR OMISSIONS OF ANY OTHER USER OR ANY OTHER PERSONS WITH WHOM YOU COMMUNICATE OR INTERACT AS A RESULT OF YOUR USE OF THE SITE, AND (II) ANY USER OR SITE CONTENT ACCESSED, VIEWED OR DOWNLOADED IN CONNECTION WITH THE USE OF THE SITE.
- YOU ACKNOWLEDGE AND AGREE THAT THE ACCESSING AND USING THE SITE, SUBMITTING AND TRANSMITTING YOUR CONTENT, COMMUNICATING OR INTERACTING WITH OTHER USERS AND ACCESSING, VIEWING OR DOWNLOADING THE USER CONTENT OF OTHER USERS ARE DONE AT YOUR OWN DISCRETION AND RISK, AND YOU AND HEREBY RELEASE HEALTH UNION AND WAIVE ANY AND ALL CLAIMS AND CAUSES OF ACTION WITH RESPECT TO ANY DAMAGES CAUSED BY ANY OF THE FOREGOING.
- CERTAIN STATE LAWS DO NOT ALLOW LIMITATIONS ON IMPLIED WARRANTIES OR THE EXCLUSIVE OR LIMITATION OF CERTAIN DAMAGES AS SET FORTH IN THIS SECTION, SO THESE LIMITATIONS AND EXCLUSIONS APPLY TO YOU ONLY TO THE EXTENT PERMITTED BY APPLICABLE LAW. IN THE EVENT THAT THE FOREGOING LIMITATION OF LIABILITY IS DETERMINED BY A COURT OF COMPETENT JURISDICTION TO BE UNENFORCEABLE, HEALTH UNION’S AGGREGATE LIABILITY ARISING OUT OF OR IN CONNECTION WITH THIS AGREEMENT SHALL BE LIMITED TO ONE HUNDRED U.S. DOLLARS (US $100).
Third Party Websites and Information
As a convenience to you, the Site provides links to other websites and sources of information (“Out Links”). In no circumstances is Health Union liable or responsible for the content contained or associated with any third party website. Health Union does not monitor or necessarily agree or know to be accurate any content contained or associated with any third party website. By clicking on an Out Link, you agree that Health Union shall not be liable, directly or indirectly, for any damage or actions caused or alleged by, or in connection with the use of any Out Link.
From time to time Health Union accepts relevant advertising on its websites. Advertising is clearly identified and surrounded by clearly viewable statements such as “ADVERTISEMENT,” “SPONSORED LINKS,” “SPONSOR RESOURCE CENTER” or other such distinctions. Health Union does not review or approve content in the advertisements. When clicking on a “banner advertisement” or entering a “sponsored page” you agree that Health Union shall not be liable, directly or indirectly, for any damage or actions caused or alleged by or in connection with the use of these links and their content.
User Participation / Terms of Conduct
At RareDisease.net, we welcome patients’, caregivers’ and others’ thoughts, comments and experiences via our interactive forums, which include comments, forums and reviews.
Health Union reserves the right, but has no obligation, to review, verify or monitor all activity and the accuracy of the information that you post. By contributing Your Content, of any type, you grant to Health Union the perpetual, worldwide, irrevocable right to use or reproduce Your Content without attribution or compensation to you. Health Union reserves the right to remove, without warning or notice to the User, any User Content that Health Union believes, in its sole discretion, is unfit for RareDisease.net. This includes posts that are deemed to be overtly commercial in nature.
You agree that you will access and use the Site is for your personal use only. Any time you access or use the Site, you are required to comply with our User conduct guidelines, as set forth below.
Public Areas. You agree that you will not access or use the Site to capture, record, upload, stream, share or store any video or images, or otherwise act in any manner, that:
- is intended to perpetrate a hoax or otherwise defraud, mislead or deceive any person or entity;
- violates, breaches or circumvents any local, state, federal or other law, rule or regulation;
- violates, breaches or circumvents the rights of any person or entity, including infringing or misappropriating such party’s patent, copyright, trademark, trade secret, moral rights or other intellectual property rights, or rights of publicity or privacy;
- is defamatory, obscene, pornographic, vulgar, lewd, offensive or unlawful, promotes discrimination, bigotry, racism, hatred, harassment or harm against any individual or group;
- promotes illegal or harmful activities or substances; or
- is harmful to children.
User Conduct Guidelines. Without limiting the above, you are not authorized to access or use the Site:
- to impersonate any person or entity, or falsify or otherwise misrepresent your identity, credentials, affiliations or intentions;
- to collect, store or use any information from or about another User;
- to “stalk” or harass any other User;
- to distribute unsolicited commercial or bulk electronic communications (or, “spam”), chain letters or “pyramid” schemes;
- for political campaigning, recruiting votes or soliciting donations or other support for legislative or other initiatives;
- to systematically retrieve information or content to create or compile, directly or indirectly, in single or multiple downloads, a collection, compilation, database, directory or the like, whether by manual methods, through the use of bots, crawlers, or spiders, or otherwise;
- if you are not able to form legally binding contracts (for example, if you are under 18); or
- for any other purposes that are not expressly permitted by the Terms.
Further, you may not:
- access, copy, distribute, share, publish, use or store, or prepare derivative works from any Site Content that belongs to Health Union, another User or to a third party, including works covered by any copyrights, trademark, patent, or other intellectual property right, except with prior express permission of the person or entity party holding the rights to license such use;
- circumvent our systems, policies, determinations as to your account status, including by attempting to access or use the Site if your account has been suspended or cancelled or you have otherwise been temporarily or permanently prohibited or blocked from using the Site;
- access, search, collect information from, or otherwise interact with the Site by “scraping,” “crawling” or “spidering” the Site, by the use of any software, device, script or robot, or by any other means (automated or otherwise), unless you have been specifically authorized to do so in a separate agreement with Health Union;
- use, display, mirror or frame the Site, or any feature, functionality, tool or content of the Site, Health Union’s name, any Health Union trademark, logo or other proprietary information, without Health Union’s express written consent;
- interfere with, disrupt, damage or compromise the Site or our systems or the access of any User, host or network in any way, including through the use of viruses, cancel bots, Trojan horses, harmful code, flood pings, denial-of-service attacks, backdoors, packet or IP spoofing, forged routing or electronic mail address information or similar methods or technology or by overloading, flooding, spamming, mail-bombing the Site or otherwise imposing an unreasonable or disproportionately large load on the Site;
- avoid, bypass, remove, deactivate, impair, descramble, or otherwise circumvent any technological measure implemented by Health Union or any of Health Union’s providers or any other third party to protect the Site;
- export or re-export the Site, except in compliance with the export control laws and regulations of any relevant jurisdictions;
- otherwise abuse the Site or breach the Terms; or
- attempt to do any of the foregoing, or advocate, encourage or assist any third party in doing any of the foregoing.
Please be aware that we require you to abide by the Federal Trade Commission’s Guides Concerning the Use of Endorsements and Testimonials in Advertising (“FTC Endorsement Guides”). We believe in full transparency and in full, fair and effective disclosures of material facts relating to your relationship with us and our Sponsors. Per the FTC’s Endorsement Guides, if you are receiving free products, services, payment or other in-kind compensation in exchange for your participation on our Site or in return for promoting a Sponsor or its products/services, you must disclose your connection to us and/or our Sponsor. This disclosure should appear in close proximity to any statements you make about Sponsor’s products or services or the Sponsor in general.
Important Information When Participating In Our Forums And Community.
Please note that posts to RareDisease.net forums and comments are viewable by the public and discoverable by search engines. When using our forums and community features, some of your personally identifiable information (only if provided by you) such as your first or last name, might be displayed, making your information no longer private. Please bear this in mind when creating a username and when posting Your Content.
User Content. The opinions expressed in RareDisease.net’s User Content, such as forums, comments, reviews, ratings and other areas of the site are solely those of the authors, who may or may not have medical or scientific training.
These opinions and comments do not represent the opinions of Health Union and do not go through our editorial board or our Editorial Policy. Health Union does not assume liability for any of the User Content on the Site. In some instances, opinions and comments may contain information about treatments or uses of prescription drugs that have not been approved by the U.S. Food and Drug Administration. Health Union does not endorse or encourage the use of non-FDA approved products, services or treatment.
Health Union reserves the right to remove User Content in its sole discretion.
Notices. Any notices or other communications permitted or required hereunder, including those regarding modifications to the Terms, will be in writing and given by Health Union (i) via e-mail (in each case to the address that you provide), or (ii) by posting to the Site. For notices made by e-mail, the date on which such notice is transmitted will be deemed the date of receipt.
Remedies. Except as expressly set forth in the Terms, the exercise by either party of any of its remedies under the Terms will be without prejudice to its other remedies available under contract, at law, in equity or otherwise.
Severability. Except as otherwise provided in the Terms, if an arbitrator or a court of competent jurisdiction finds any provision of the Terms to be invalid, void or unenforceable, in whole or in part, for any reason, the offending provision will be enforced to the maximum extent permissible and will not affect the validity or enforceability of the remaining provisions, which will remain in full force and effect.
California Residents. Pursuant to California Civil Code §1789.3, California residents are also entitled to the following specific consumer rights notice:
Complaints regarding the Site or requests to receive further information regarding use of the Site may be sent to the above address or to firstname.lastname@example.org. The Complaint Assistance Unit of the Division of Consumer Services of the California Department of Consumer Affairs may be contacted in writing at 1625 North Market Boulevard, Suite N112, Sacramento, CA 95834 or by telephone at (916) 445-1245 or (800) 952-5210. Hearing impaired persons may call TDD (800)-326-2297 or TDD (916)-928-1227, see www.dca.ca.gov for additional information.
Contact Us. If you have any questions or concerns, please contact Health Union at email@example.com. You can also write to us at:
Health Union, LLC
1218 Chestnut St. 10th Fl.
Philadelphia, PA 19107
Copyright ©2018 Health Union, LLC. All rights reserved.