Terms and Conditions of Use


The following terms constitute an Agreement between you and PatientsLikeMe LLC (“PatientsLikeMe”), the operator of www.patientslikeme.com (the “Platform”). This Agreement governs your use of the Platform, both as a casual visitor and a registered member as described below.

By accessing or using the Platform, you agree to be bound by the terms of this Agreement. To the extent you register on the Platform as a Member, then in addition to the terms that are applicable to all users of the Platform, the terms that apply only to Members shall apply to you too.

Membership Eligibility

To become a Member and access the area on this Platform reserved for Members (the “Member Area”), PatientsLikeMe requires that you are (a) a person 13 years of age or older (16 or older if in the EU or UK) or a parent or legal guardian acting for a person who is under 13 years of age (16 or older if in the EU or UK), with a personal interest in a health condition or in tracking their health and wellness on the Platform; or (b) a caregiver for a person eligible to join; or (c) a health care professional (e.g., doctor, nurse) authorized by PatientsLikeMe; or (d) a guest with legitimate, non-commercial reasons to participate in the community and who agrees to respect the privacy and preserve the dignity of all community participants; or (e) guest as authorized by a PatientsLikeMe employee.

By registering as a Member, you represent and warrant that you are at least the minimum age required for membership on the platform.

This Site Does Not Provide Medical Advice

All of the content provided on the Platform, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings, and any other material provided on the Platform are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on this Platform.

If you think you may have a medical emergency, call your doctor or 911 immediately. Be aware that additional resources to call can be found here.

PatientsLikeMe does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned by Members on the Platform. Reliance on any information provided by PatientsLikeMe.com, by persons appearing on the Platform at the invitation of PatientsLikeMe, or by other Members is solely at your own risk.

Acceptable and Lawful Use of Platform by Members

Members shall not post or upload any information or other content on the Platform that (a) is false, inaccurate or misleading; (b) is obscene or indecent; (c) infringes any copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy of any party; or (d) is defamatory, libelous, threatening, abusive, hateful, or contains pornography. Members shall not interfere with other Members’ use and enjoyment of the Platform (for example, by harassing, threatening, soliciting, overly promoting personal interests, or stalking another participant of a forum, seminar, or threaded message, including the use of expressions of bigotry, racism, hatred, or profanity). Members may not use the Platform to conduct any activity that is illegal or violates the rights of others, provide instructional information about illegal activities, or promote physical harm or injury against any group or individual.

All Members represent and warrant that the information they provided when registering as a Member, and all information that they subsequently provide regarding themselves and their membership, is true and accurate and not misleading.

Nonprofit Tailored Communities

Representatives of nonprofit organizations that have entered into an agreement with PatientsLikeMe to host a "Tailored Community" on the Platform may register as Members ("Nonprofit Members") on the Platform. For purposes of clarity, references to “members” in these Terms of Use include Nonprofit Members and, except as expressly stated herein, the same restrictions and obligations under these Terms of Use that apply to Members also apply to Nonprofit Members.

Each such Nonprofit organization will be provided with a unique hyperlink to a Member registration page on the Platform (the “Nonprofit Registration Link”) that the Nonprofit Member can distribute to their Members who are eligible to join the Platform (as described above under “Membership Eligibility”).

While Nonprofit Members may promote their own events, initiatives, and services to other Members through the means described above, they may not directly solicit donations or volunteer services. For example, Nonprofit Members may, through posting on their profile and through Private Messages to Members who follow their profile, promote and notify Members of a fundraising event or volunteer initiative, including information regarding ticket prices to attend such an event or the scope of a volunteer initiative. However, it is not permitted to expressly ask Members through use of the Platform to purchase tickets to such an event or to donate money, property, or services to the Nonprofit Member or any other party.

In addition, Nonprofit Members may not create posts to advertise or promote their services, events, or initiatives. Nonprofit Members can use Private Messages, polling, and brief surveys to contact Members who are Members of their Tailored Community; however, they may not Private Message, poll, or survey Members who are not Members of their Tailored Community.

No Interference with Operation of Platform

You may not use any robot, spider, scraper, or other automated means to access the Platform or content or services provided on the Platform for any purposes. You may not post content on the Platform that contains or links to any malware, viruses, Trojan horses, worms, time bombs, spiders, 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 not attempt to make the Platform unavailable through denial-of-service attacks or other means. You shall not use contact information provided by Members, or collect information about our Members, to facilitate the sending of unsolicited bulk communications (SPAM) or allow others' use of your membership account to take such actions.

Platform for Non-Commercial Use Only

The Platform content, including the Member Area and the content and information contained in the Member Area, is for personal, non-commercial use by individual Members. Organizations, companies, and/or businesses may not become Members and use the Platform without express consent from PatientsLikeMe. Members of the Platform with individual commercial interests may not solicit or overtly promote their products or services within the Member Area. All content shared within the Platform is not for external use. Non-members seeking permission to contact Platform Members, should contact mediarelations@patientslikeme.com (for media and analyst inquiries) and research@patientslikeme.com (for research requests). General site inquiries should be directed to support@patientslikeme.com.


You agree that you have read, understood and accept the PatientsLikeMe.com Privacy Policy. This policy explains collection of information from you when using the Platform and its use of and sharing of such information. We also encourage you to read our Openness philosophy.

Posting and Use of Content in the Member Area

The Member Area includes community areas, such as forums and member areas, where Members may post messages, images, and other content (“User Submissions”). If you are a Member, you (or the author) owns the copyright in the messages, images, and other content you post in the Member Area, but by posting such content within User Submissions to the Member Area you grant PatientsLikeMe and our affiliates the right to use, copy, display, perform, distribute, translate, edit, and create derivative works of your User Submissions, subject to the terms of the Privacy Policy.

While some community areas in the Member Area are monitored periodically for topicality, PatientsLikeMe has no obligation to prescreen postings and is not responsible for their content. We encourage you to notify us of inappropriate or illegal content and we reserve the right to remove postings for any reason.

Identifying Other Members

You agree not to disclose to any person or entity personally identifiable information about other Members that you encounter while using this Platform (whether posted in the Member Area by a Member or emailed to you by a Member) without the express consent of such Member. You may disclose information of a general nature (that could not identify the Member who provided such information or whom such information is about) to third parties outside this Platform, subject to the above restriction on commercial use.

Digital Millennium Copyright Act

If you are a copyright owner or an agent thereof and believe that any user posting or other content on this Platform infringes upon your copyright, you may submit a written notification pursuant to the Digital Millennium Copyright Act (“DMCA”) (see 17 U.S.C. 512(c)(3) for further information) by providing our Copyright Agent (listed below) with the following information: (i) an electronic or physical signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed; (ii) a description of the copyrighted work claimed to have been infringed or if multiple copyrighted works are covered by a notification, a representative list of such works on our Platform; (iii) a description of the location on the Platform of the allegedly infringing material(s); (iv) your address, telephone number, and email address; (v) a written statement that you have a good faith belief that use of the material(s) in the manner complained of is not authorized by the copyright owner, its agent, or the law; and (vi) a written 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.

If a User Submission that you submitted has been removed as a result of a notification as described above and you believe that such a User Submission or portion of a User Submission was posted lawfully, please contact us about our counter-notification procedure through which you can dispute the allegation and request re-posting of the User Submission content at issue.

The PatientsLikeMe designated Copyright Agent for notice of claims of infringement is:

PatientsLikeMe LLC
Christopher Renfro-Wallace
6 Liberty Square, Suite 2602
Boston, MA 02109
telephone: 617-229-6530

Only notices of alleged copyright infringement and requests about the counter-notification procedures should go to the Copyright Agent; any other feedback, comments, requests for technical support, and other communications should be directed to PatientsLikeMe at support@patientslikeme.com. You acknowledge that if you fail to comply with all of the notice requirements of the DMCA, your notice may not be valid.

Member Password and Login Identity

You are responsible for maintaining the confidentiality of your Member password, and are fully responsible for all activities that occur under your password or account with or without your knowledge. You agree to immediately notify PatientsLikeMe of any unauthorized use of your membership password or login or any other breach of security.

Links to Other Websites

PatientsLikeMe.com may contain links to other websites that are not under the control of PatientsLikeMe. The inclusion of any link does not imply endorsement by PatientsLikeMe of such site and PatientsLikeMe is not responsible for the content of such linked sites.

Membership Termination

You agree that PatientsLikeMe may, with or without cause, immediately terminate your PatientsLikeMe.com membership or limit or terminate your access to the Member Area or the Platform without prior notice. Without limiting the foregoing, the following may lead to a termination by PatientsLikeMe of a Member's membership and use of the Platform: (a) breaches or violations of this Terms of Use Agreement or other incorporated agreements or guidelines, (b) requests by law enforcement or other government agencies, (c) a request by you (self-initiated membership cancellation), (d) unexpected technical issues or problems, and (e) extended periods of inactivity. PatientsLikeMe has no obligation to maintain or store information or data that you have posted on or uploaded to the Platform.


Membership with PatientsLikeMe.com is currently free. PatientsLikeMe reserves the right to, from time to time, change the terms of this Agreement and could charge for membership and/or to provide additional optional services for a fee in the future.

Disclaimer of Warranties

The Platform and the content and services made available on the Platform are provided on an “as is” and “as available” basis. PatientsLikeMe does not make and disclaims all express and implied warranties and representations, including, but not limited to, any implied warranty of fitness for a particular purpose, with regard to the Platform, the Platform content, or any advice or services provided through the Platform to the extent permitted by law. PatientsLikeMe does not warrant that access to the Platform or its content or services will be uninterrupted or error-free or that defects in the Platform will be corrected.

The advice, recommendations, information, and conclusions posted or transmitted by other Members of the Platform are not in any way vetted, approved or endorsed by PatientsLikeMe, and you use such information at your own risk.

Limitation of Liability

Under no circumstances shall PatientsLikeMe, its partners, contributors, agents, employees, directors, or affiliates be liable for any indirect, incidental, special, or consequential damages (even if it has been advised of the possibility of such damages) due to your use of this Platform or due to your reliance on any of the content contained or the services provided on the Platform.


You agree to indemnify and hold harmless PatientsLikeMe, its officers, employees, agents, subsidiaries, affiliates and other partners, from and against any claims, actions or demands, liabilities and settlements including without limitation, reasonable legal and accounting fees, resulting from, or alleged to result from, your violation of this Agreement.

International Users

PatientsLikeMe makes no claims that information on the Platform is appropriate or may be downloaded outside of the United States. Personal information (“Information”) that is submitted to this Platform will be collected, processed, stored, disclosed and disposed of in accordance with applicable U.S. law, the EU-US and Swiss Privacy Shield Framework, the EU General Data Protection Regulation, and the PatientsLikeMe.com Privacy Policy. If you are a non-U.S. user, you acknowledge and agree that PatientsLikeMe may collect and use your Information and disclose it to other entities outside your resident jurisdiction as long as such collection, use, or disclosure does not violate applicable law or the PatientsLikeMe.com Privacy Policy. In addition, such Information may be stored on servers located outside your resident jurisdiction. U.S. law may not provide the degree of protection for Information that is available in other countries. In fact, be aware that the European Court of Justice (ECJ) determined in July 2020 that no data transferred to the United States can be adequately protected from the United States government and that the United States does not provide adequate judicial remedies against the United States government for invasions of Europeans’ privacy. By providing us with your Information, you acknowledge that you consent to the transfer of such Information outside your resident jurisdiction as detailed in our Privacy Policy.

Governing Law and Venue

This agreement shall be governed by the laws of the Commonwealth of Massachusetts and the applicable federal laws of the United States of America. All disputes arising under, or in any way connected with membership in or use of the Platform, shall be litigated exclusively in the state and federal courts residing in the Commonwealth of Massachusetts, and in no other court or jurisdiction. You hereby submit to the jurisdiction of the state and federal courts sitting in the Commonwealth of Massachusetts. Exceptions may apply for residents of the European Union and the UK, who have the right to lodge a complaint with a national Data Protection Authority if they have a complaint about our use or processing of their Personal Data.

Member Notices

If you register as a Member, you agree that PatientsLikeMe may send notices to you by email at the email address you provide when registering to become a Member (or which you later update using the functionality of the Platform).

Miscellaneous Terms

PatientsLikeMe® and the PatientsLikeMe logo are trademarks of PatientsLikeMe. You agree not to display or use these trademarks in any manner without prior, written permission from PatientsLikeMe.

PatientsLikeMe may assign this agreement at any time to a subsidiary or parent company or to a successor to its business as part of a merger or sale of substantially all of its assets. You may not assign or transfer this agreement.

If any provision of this Agreement is held to be unenforceable for any reason, the remaining provisions will be unaffected and remain in full force and effect.

For any questions or comments, or to report violations of this Agreement, let us know, or contact us at:

PatientsLikeMe LLC
Attn: Privacy and Compliance Dept.
6 Liberty Square, Suite 2602
Boston, MA 02109

Modifications to this Terms of Use Agreement

We reserve the right to modify this Agreement at any time, and without prior notice, by posting amended terms on this Platform. We encourage you to review this Agreement periodically for any updates or changes, which will have an update effective date. Use of the Platform following any such change constitutes your agreement to follow and be bound by this Agreement as amended.

History of Updates/Changes to Terms of Use:

  • On , updated to provide new postal mailing address, note the July 2020 European Court of Justice ruling with regard to US data protection inadequacy, specify minimum age of membership to be 16 for EU and UK users, and some minor edits such as changing capitalization and fixing typographical errors.
  • On , updated to make current with Platform vocabulary and other minor changes.
  • On , updated to include Nonprofit Members.
  • On , updated to include additional information on Digital Millennium Copyright Act and clarify membership eligibility.
  • On , the “Acceptable and Lawful Use of Site by Members” and “Non-Commercial Use by Members” sections were updated.
  • On , minor typographical and grammatical errors were corrected.
  • On , this Agreement was substantially revised.
  • On , the “Membership Eligibility” and “Acceptable and Lawful Use of the Site” sections were updated.
  • On , original version of this Agreement was added to the site.