Terms of Use for patientworthy.com:

Effective April 2023

I. General Terms of Use

Welcome to Patient Worthy. These Terms of Use (“Terms of Use”) explain the terms by which you agree to use “patientworthy.com” (the “Website”). Please read these Terms of Use carefully before using the Website. Your use of the Website indicates that you agree with these Terms of Use and to the collection and use of your information as set forth in the Patient Worthy Privacy Notice, found at https://patientworthy.com/privacy-notice/. If you choose to contribute to the Website by sharing your story with us, writing content, or commenting on posted material, please see the User Comment Agreement and Contributor Agreement that are included below as part of these Terms of Use. If you do not agree to these Terms of Use and the Patient Worthy Privacy Notice, please do not use the Website. Please review these Terms of Use regularly, as we may change them from time to time.

The Website is intended to be an informational and supportive resource for the rare disease community. You must be at least 18 years of age to register as a user or subscribe to any services offered through the Website.

1. THOUGHT-PROVOKING CONTENT AND INFORMATION

Our goal is to provide reliable, relevant and informative content for the rare disease community. We are not providing medical advice. You should not rely on information obtained through the Website as a substitute for consultations with qualified health care professionals who are familiar with your individual medical needs. The thoughts, opinions and recommendations published on the Website, or accessible through links found on the Website, are not necessarily those of Patient Worthy and are not endorsed by Patient Worthy.

PATIENT WORTHY MAKES NO WARRANTIES OF ANY KIND REGARDING THE INFORMATION CONTAINED ON THIS WEBSITE, INCLUDING BUT NOT LIMITED TO, ANY WARRANTY OF ACCURACY, COMPLETENESS, CURRENCY, RELIABILITY, MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE, OR ANY WARRANTY THAT THESE PAGES, OR THE SERVER THAT MAKES THEM AVAILABLE, ARE FREE OF VIRUSES OR OTHER HARMFUL ELEMENTS, AND SUCH WARRANTIES ARE EXPRESSLY DISCLAIMED. ALL INFORMATION AND CONTENT ON THE WEBSITE IS PROVIDED “AS IS”.

2. CUSTOMIZE YOUR EXPERIENCE

Like our content? Want to customize the stories and information you receive? Registering as a user allows you to utilize a variety of Patient Worthy features and services to customize your user experience. Our Privacy Notice explains how we will protect the information you share as a registered user.

As a registered user, you will have a unique username and password. Please treat this information as confidential and do not disclose it to others. If we suspect that you have violated these Terms of Use or otherwise used the Website in a manner we disapprove, we have the right to disable your user name and password.

3. RESPONSIBILITY FOR OWN USE

You are responsible for your use of the Website and any contributions or comments that you provide. In the event that any third party brings a complaint, claim or action against Patient Worthy or any of its contributors, volunteers, officers, directors, and employees arising out of or related to your use of the Website, you assume full responsibility for all costs and expenses incurred by Patient Worthy or any of its contributors, volunteers, officers, directors, and employees. Patient Worthy is not responsible for what you do with, or how you react to, the information contained on the Website or other websites to which it is linked, and you agree that you will not bring any claim, demand, or action against Patient Worthy if you find something on the Website to be obscene, offensive, defamatory, or infringing upon your intellectual property rights. In no event will Patient Worthy or its collaborators and contributors be liable to you for any decision made or action taken by you in reliance on information obtained through the Website, or for any consequential, special or similar damages, even if advised of the possibility of such damages.

In addition, you agree to indemnify and hold harmless Patient Worthy and its contributors, volunteers, officers, directors, and employees from and against all losses, expenses, damages and costs, including reasonable attorneys’ fees, resulting from your violation of these Terms of Use or your breach of the representations and warranties contained in these Terms of Use. We reserve the right to take over the exclusive defense of any claim for which we are entitled to indemnification, in which instance you shall cooperate with us in such defense as we reasonably request.

4. THE DO’S AND DON’TS

• Reproduction of content.

We encourage you to share and distribute the information on this Website with others by using one of the “sharing” icons listed on the Website. You also may provide a hypertext link to this Website, provided that you follow these requirements: (a) the link must be a “text only” link clearly marked “Patient Worthy,” (b) the appearance, position and other aspects of the link may not be such as to damage or dilute the goodwill associated with Patient Worthy’s name and trademarks, (c) the appearance, position and other aspects of the link may not create the false appearance that an entity other than Patient Worthy is associated with or sponsored by Patient Worthy, and (d) the link, when activated by a user, must display this Website full screen and not with a “frame” on the linked website. Patient Worthy reserves the right to revoke its consent to the link at any time in its sole discretion. You may not reproduce, duplicate, copy, sell, resell, redistribute, exploit, or claim as your own any content from the Website for any commercial purpose without our written consent.

• No use of automated information compilers.

You agree not to use any automated means to download or reconstruct the information contained in the Website.

• System integrity.

You may not use any device, software or routine to interfere or attempt to interfere with the proper working of the Website. You may not take any action which imposes an unreasonable or disproportionately large load on our infrastructure

• No solicitation or “spam”.

You agree not to include the Website as part of any solicitation, “junk mail” or “spam”.

• No harassment or objectionable use of the Website or interference with others’ use of the Website.

You agree not to harass, threaten or make any other objectionable communication with any other user of the Website and further agree to cease such conduct at the request of either Patient Worthy, the person to whom the conduct is targeted, or applicable government authorities. Moreover, you shall not post, provide or otherwise make available through the Website any material of any sort that:

• • is defamatory or libelous or would violate or infringe in any way upon the rights of others,
  • is protected by copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy, without the express permission of the owner of such right,
    violates any law, statute, ordinance or regulation, including without limitation the laws and regulations governing export control, or would give rise to criminal or civil liability of any kind whatsoever,
  • is illegal or promotes illegal activity,
  • is deliberately false or misleading,
  • is rude, demeaning, crass, insulting, indecent, pornographic, obscene, objectionable or offensive,
  • promotes bigotry, racism, prejudice, discrimination, or hatred,
  • is threatening or abusive or promotes emotional, psychological, or physical harm or violence against any individual or group,
  • violates any laws regarding unfair competition, discrimination or false advertising,
  • contains any viruses, Trojan horses, worms, time bombs, cancelbots or other computer programming routines that are intended to damage, detrimentally interfere with, surreptitiously intercept or expropriate any system, data or personal information.

You shall use the Website solely for lawful purposes and shall not engage in any conduct that interferes with any other person’s use or enjoyment of the Website, as determined in our sole and absolute discretion

We reserve the exclusive right to establish and modify the criteria for what constitutes offensive or objectionable content. It is impossible for us to know whether a posting represents a copyright or other infringement. The provider of any content is responsible for ensuring that such content does not violate any copyright or trademark.

• Provide truthful and accurate material.

You agree that any information provided by you will be truthful, accurate and not misleading, to the best of your knowledge. You agree not to misrepresent yourself when using the Website.

• No commercial use of the Website.

You shall not use the Website for commercial activity (other than incidental use) or for any solicitation whatsoever, or to solicit any charitable requests or petitions for signature, unless Patient Worthy has expressly endorsed such use or otherwise has provided prior, written consent. This means there is to be no advertising or promotion for commercial purposes.

• Be Careful.

Any time that you utilize the internet to upload or transmit information to a Website there is a risk that the information may be intercepted and used by an unauthorized third party. You bear all risks associated with uploading information to the Website. You acknowledge that any material and/or data downloaded or otherwise obtained through the Website is done at your own discretion and risk and that you are solely responsible for any damage to your computer system or loss of data that results from the download of such material and/or data.

5. PATIENT WORTHY’S RESPONSIBILITIES

• Protection of information.

When posting or sharing content, please remember that all content displayed on the Website is public information. If you choose to register, the personal information that you share with us in your registration will only be used as permitted in these Terms of Use and our Privacy Notice. We may view and use your personal information for customer service and account maintenance. We will disclose your personal information only when we, in good faith, believe that such action is reasonably necessary:

• • to comply with the law;
  • to comply with legal process (including by making such information available to a government agency or court if so requested, with or without the necessity of a subpoena);
  • to enforce these Terms of Use;
  • to respond to claims that any content violates the rights of third parties; or
  • to protect the interests of Patient Worthy.

• Modification or termination of the Services.

We reserve the right to modify or discontinue the Website, in whole or in part, at any time without prior notice. We shall not be liable to you or any third party for any discontinuation of service. If you breach any of the terms of these Terms of Use, we may terminate your right to use the Website.

• Links.

We may provide links on the Website to other websites which are not under the control of Patient Worthy. In general, any website which has an address (or URL) which does not contain “patientworthy.com” is such a website. These links are provided for convenience only and are not intended as an endorsement by Patient Worthy of the organization or individual operating the website or a warranty of any type regarding the website or the information on the website.

• Storage of information.

Patient Worthy is not responsible for the storage, failure to store, or deletion of any content, information, materials, postings, user comments, or other information displayed on the Website or any written or email communications received from users of the Website. Any personal information shared with Patient Worthy will be stored and used as provided in the Privacy Notice.

6. OUR COPYRIGHT AND EDITORIAL POLICY

• Copyrights.

The contents of the Website constitute a compilation copyright of Patient Worthy. The works of authorship contained in this Website, including but not limited to all design, text and images, are owned or licensed by Patient Worthy, and may not be copied, reproduced, transmitted, displayed, performed, distributed, rented, sublicensed, altered, stored for subsequent use or otherwise used in whole or in part in any manner except as provided in these Terms of Use or as permitted through the features of the Website, except that you may make such temporary copies in a single computer’s RAM and hard drive cache as are necessary to browse the Website, and you may make one permanent printout of each page of the Website (unmodified in form, with a copy of these Terms of Use attached) to be used by you for personal and noncommercial uses which do not harm the reputation of Patient Worthy.

We take claims of copyright infringement seriously. We will respond to notices of alleged copyright infringement that comply with applicable law. If you believe any materials accessible on or from this Website infringe your copyright, you may request removal of those materials (or access to them) from the Website by submitting written notification to our Copyright Agent (designated below). In accordance with the Online Copyright Infringement Liability Limitation Act of the Digital Millennium Copyright Act (17 U.S.C. § 512) (“DMCA”), the written notice (the “DMCA Notice”) must include substantially the following:

• • your physical or electronic signature;
  • identification of the copyrighted work you believe to have been infringed or, if the claim involves multiple works on the Website, a representative list of such works;
  • identification of the material you believe to be infringing in a sufficiently precise manner to allow us to locate that material;
  • adequate information by which we can contact you (including your name, postal address, telephone number and, if available, e-mail address);
  • a statement that you have a good faith belief that use of the copyrighted material is not authorized by the copyright owner, its agent or the law;
  • a statement that the information in the written notice is accurate; and
  • a statement, under penalty of perjury, that you are authorized to act on behalf of the copyright owner.

Our designated Copyright Agent to receive DMCA Notices is:

General Manager
Patient Worthy
304 S. Jones Blvd, Ste 2035
Las Vegas, NV 89107
[email protected]

If you fail to comply with all the requirements of Section 512(c)(3) of the DMCA, your DMCA Notice may not be effective. Please be aware that if you knowingly materially misrepresent that material or activity on the Website is infringing your copyright, you may be held liable for damages (including costs and attorneys’ fees) under Section 512(f) of the DMCA.

If you believe that material you posted on the Website was removed or access to it was disabled by mistake or misidentification, you may file a counter-notification with us (a “Counter-Notice”) by submitting written notification to our copyright agent (identified above). Pursuant to the DMCA, the Counter-Notice must include substantially the following:

• • your physical or electronic signature;
  • an identification of the material that has been removed or to which access has been disabled and the location at which the material appeared before it was removed or access disabled;
  • adequate information by which we can contact you (including your name, postal address, telephone number and, if available, e-mail address);
  • a statement under penalty of perjury by you that you have a good faith belief that the material identified above was removed or disabled as a result of a mistake or misidentification of the material to be removed or disabled;
  • a statement that you will consent to the jurisdiction of the Federal District Court for the judicial district in which your address is located (or if you reside outside the United States for any judicial district in which the Website may be found) and that you will accept service from the person (or an agent of that person) who provided the Website with the complaint at issue.

Completed Counter-Notices should be sent to the designated Copyright Agent shown above. The DMCA allows us to restore the removed content if the party filing the original DMCA Notice does not file a court action against you within ten business days of receiving the copy of your Counter-Notice. Please be aware that if you knowingly materially misrepresent that material or activity on the Website was removed or disabled by mistake or misidentification, you may be held liable for damages (including costs and attorneys’ fees) under Section 512(f) of the DMCA.

• Removal of content; right but not obligation to monitor content.

Patient Worthy shall have the right, exercisable in its sole and absolute discretion, but not the obligation, to refuse to post or to delete or edit any information or data posted to the Website which Patient Worthy determines, in its sole and absolute discretion, to be offensive, racist, lewd, profane, obscene, pornographic, hateful, rude, abusive, disruptive, defamatory or otherwise in violation of these Terms of Use. Patient Worthy shall have the right, exercisable in its sole and absolute discretion, but not the obligation, to monitor the content of the Website in order to determine compliance with these Terms of Use and any operating rules established by Patient Worthy, to satisfy any law, regulation or authorized government request, or for any other reasonable commercial purpose.

7. MISCELLANEOUS

The Website is not intended for use by persons under the age of 13. We do not collect, use, or maintain any information from users who are under the age of 13. If you believe that a person under the age of 13 has provided information to us, please notify us immediately via email to [email protected]. Any persons over the age of 13 but under the age of 18 who desire to share information with us or participate as a contributor must have parental consent.

Your sole and exclusive remedy for any damages caused or allegedly caused by any failure of performance, error, omission, interruption, defect, delay in operation or transmission, or other cause associated with the Website shall be to discontinue your use of the Website.

You agree that, regardless of any statute or law to the contrary, any claim or cause of action arising out of or related to your use of the Website, or these Terms of Use must be filed within one (1) year after such claim or cause of action arose or be forever barred.

• No confidential relationship.

None of the content or information that you share with us shall constitute a confidential communication. Participation on the Website is voluntary and shall not give rise to any confidential, fiduciary, contractual, or other special relationship between you and Patient Worthy (other than the contractual relationship between you and Patient Worthy by virtue of these Terms of Use).

II. User Comment Agreement

We may allow users to submit comments regarding content and stories contained on the Website. Your submission of comments and messages is subject to the following terms and conditions:

1. License.

By submitting comments, posting messages or engaging in any other form of communication (individually or collectively “Communications”) to the Website, you hereby grant to Patient Worthy a perpetual, worldwide, irrevocable, unrestricted, non-exclusive, royalty free license to use, copy, license, sublicense, adapt, distribute, display, publicly perform, reproduce, transmit, modify, edit, incorporate into any works, and otherwise exploit such Communications, in all media now known or hereafter developed (including but not limited to photos, videos, audio files, text and other materials). You hereby waive all rights to any claim against Patient Worthy for any alleged or actual infringements of any proprietary rights, rights of privacy and publicity, moral rights, and rights of attribution in connection with such Communications.

2. No Confidentiality or Confidential Relationship.

You acknowledge and agree that transmissions to and from the Website are not confidential and your Communications may be read or intercepted by others. You acknowledge that by submitting Communications to the Website, no confidential, fiduciary, contractually-implied or other relationship is created between you and Patient Worthy other than pursuant to these Terms of Use.

3. What Patient Worthy May Do.

You acknowledge and agree that (i) Patient Worthy has no obligation to use or respond to any Communications; (ii) Patient Worthy does not and shall not have any obligation to preview or review any Communications; (iii) Patient Worthy does not assure the accuracy or quality of Communications, or that harmful offensive, unlawful or otherwise objectionable Communications will not appear on the Website; (iv) Patient Worthy may monitor any or all Communications in its sole discretion; (v) Patient Worthy may remove any Communications, in whole or in part, from the Website for any reason; and (vi) Patient Worthy may exclude any person from further use of the Website.

4. Your Responsibility.

You, as the person making or transmitting Communications to the Website, bear full responsibility for the Communications. Patient Worthy disclaims any responsibility for any inappropriate statements or material, or any incorrect information contained in any Communications.

5. Your Representations.

You represent and warrant that:

• • (i) you are at least 18 years of age;
  • (ii) you have the right and authority to grant these rights;
  • (iii) the Communications are original to you;
  • (iv) the Communications do not knowingly contain any untrue, defamatory, or offensive statements, invade any right of privacy, or infringe upon any statutory or common law copyright or otherwise violate the rights of any third party;
  • (v) the Communications do not contain any instructions or material that may cause harm or injury to others;
  • (vi) all statements in the Communications that are asserted as facts are true and/or based upon reasonable research for accuracy; and
  • (vii) the rights granted under these Terms of Use to Patient Worthy are not in conflict with any other agreements or grant of rights pertaining to the Communications.

BY SUBMITTING COMMUNICATIONS TO US, YOU ARE DEMONSTRATING THAT YOU CONSENT TO THE TERMS OF THIS USER COMMENT AGREEMENT. IF YOU DO NOT AGREE TO THESE TERMS, DO NOT SEND COMMUNICATIONS TO US.

III. Contributor Agreement

At Patient Worthy, it is our mission to provide education, information, resources, and support to patients with rare diseases. To support our mission, we share and promote content that we believe will be of value to the community of patients with rare diseases. If you would like to be a contributor, either by writing material as requested by us or by allowing us to post other material written by you, please review the terms of this Contributor Agreement.

1. License and Acknowledgment.

As a contributor, you agree to allow Patient Worthy to publish material written by you (the “Work”) on the Website. You grant Patient Worthy the perpetual, worldwide, irrevocable, unrestricted, non-exclusive, royalty free license to use, copy, license, sublicense, adapt, distribute, display, publicly perform, reproduce, transmit, translate, modify, edit, incorporate into any works, and otherwise exploit the Work, in all media now known or hereafter developed (including but not limited to photos, videos, audio files, text and other materials).

Your authorship will be acknowledged on the Website, but the Work, as formatted and displayed on the Website, will be the property of Patient Worthy. You grant Patient Worthy the right to use your name, likeness, biographical information, and the logo of your website, if applicable, in connection with the Work. Quotations from other sources must be cited properly. Once the Work has been submitted to and published by Patient Worthy, you may publish it elsewhere, in part or in whole, either online or in a paper version, including on your own website or blog, provided that you plainly and conspicuously include the following statement and a link to the Work on the Website: This material was published by Patient Worthy and can be found at www.patientworthy.com.

Any links included in a Work must be approved by Patient Worthy prior to being published on the Website.

2. Author Biography.

Before submitting your contribution, you must create the author bio form [link]. We will not sell, transfer, share, or otherwise disclose your author bio to any third parties without your express permission and consent. We will protect your author bio the same way that we protect our own confidential and proprietary information.

3. Submission of Photographs and Digital Media.

If you submit any photographs, images, or other digital media to Patient Worthy, you authorize Patient Worthy to use, publish, and publicly display your photographs, images, and digital media, including memes, (collectively “Images”) on the Website and in other print, digital, or electronic media for the purposes of patient education, disease awareness, marketing and promotion of the Website, and other general business purposes. You further grant to Patient Worthy and its designees the unlimited, worldwide right to use your Images, and to reproduce, copy, modify, create derivative works, and otherwise use, display, distribute, exhibit, transmit, and broadcast the Images or any part thereof, in any media, means, or embodiment, now known or hereafter to become known for the purposes stated above. The Images also may be used by partner agencies of Patient Worthy.

You will not receive payment or royalty of any kind from Patient Worthy for the use of the Images. Patient Worthy is not obligated to utilize any of the Images. Any use of the Images will be at the discretion of Patient Worthy and you will have no right of inspection or approval of Patient Worthy’s use of the Images.

4. Your Representations.

You represent and warrant that:

• • (i) you are at least 18 years of age;
  • (ii) you have the right and authority to grant these rights;
  • (iii) the Work and Images are original to you;
  • (iv) the Work and Images do not knowingly contain any untrue, defamatory, or offensive statements, invade any right of privacy, or infringe upon any statutory or common law copyright or otherwise violate the rights of any third party;
  • (v) the Work and Images do not contain any instructions or material that may cause harm or injury to others;
  • (vi) all statements in the Work that are asserted as facts are true and/or based upon reasonable research for accuracy; and
  • (vii) the rights granted under these Terms of Use to Patient Worthy are not in conflict with any other agreements or grant of rights pertaining to the Work and Images.

5. Your Responsibilities.

You agree to indemnify, defend, and hold harmless Patient Worthy in connection with any legal action brought against Patient Worthy arising from or relating to the publication of the Work or Images. You agree to reveal to Patient Worthy any actual or potential conflict of interest, including, but not limited to, any financial interest in any product, firm, or commercial venture relating to the subject of the Work.

6. Our Right to Edit and Illustrate the Work.

Patient Worthy may illustrate the Work. You grant Patient Worthy the right to edit the Work or Images for publication. In addition, Patient Worthy may remove from the Work or Images any material or content that, in Patient Worthy’s sole discretion, is deemed offensive, harassing, or otherwise objectionable. Patient Worthy reserves the right to remove the Work/Images from the Website at any time in its sole discretion.

7. Limitation of Liability.

PATIENT WORTHY WILL NOT BE LIABLE UNDER ANY CIRCUMSTANCES FOR ACTUAL, CONSEQUENTIAL (INCLUDING BUT NOT LIMITED TO LOST OPPORTUNITIES OR PROFITS), SPECIAL OR PUNITIVE DAMAGES THAT MAY ARISE FROM THE POSTING OF THE WORK AND THE IMAGES ON THE WEBSITE, EVEN IF ADVISED OF THE POSSIBILITY OF SUCH DAMAGES.

8. Entire Agreement.

The terms of this Contributor Agreement, including the Terms of Use and Privacy Notice, constitute the entire agreement between you and Patient Worthy concerning the Work. These Terms of Use apply to all Work submitted to Patient Worthy by you. Any material modifications to these Terms of Use must be agreed to in writing by both parties.

BY SUBMITTING YOUR WORK AND IMAGES TO US, YOU ARE DEMONSTRATING THAT YOU CONSENT TO THE TERMS OF THIS CONTRIBUTOR AGREEMENT. IF YOU DO NOT AGREE TO THESE TERMS, DO NOT SUBMIT YOUR WORK/IMAGES TO US.