TERMS AND CONDITIONS OF USE

Welcome community member and thank you for joining our community.
Please read these terms and conditions of use (“Terms”) carefully. These Terms are a binding agreement between you (“you”) and rareLife solutions, Inc. (“rareLife solutions”, “we” or “us”). These Terms govern your use of our websites located at www.onesmavoice.com and any of our other websites, their respective subdomains, and software applications containing a link to these Terms (collectively, our “Sites”). Other people, a.k.a. users, who have agreed to these Terms or prior Terms for using our Sites are referred to as “community members” or “community member” or “member.” Our Sites provide a common online interactive space for community members to come together, share, learn and communicate.

BY USING ANY OF OUR SITES, YOU ARE STATING THAT YOU HAVE READ AND UNDERSTAND, AND AGREE TO BE BOUND BY, THESE TERMS (WHETHER OR NOT YOU CONFIRM YOUR AGREEMENT, SUCH AS BY CLICKING “I AGREE”). IF YOU DO NOT AGREE TO THESE TERMS, YOU ARE NOT PERMITTED TO USE ANY OF OUR SITES.

IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY, CALL 911 IMMEDIATELY.

1. Being a community member and Access
  - To become a community member of and access the area on any Site reserved for community members, rareLife solutions requires that you satisfy certain eligibility criteria set forth in the applicable registration form, for example, that you are any of the following:
    - A patient diagnosed with a specific disease or condition addressed on the applicable Site who is at least 16 years old (a “Patient”) or a parent or legal guardian acting for a Patient who is under 18 years of age or otherwise incapacitated;
    - A caregiver who is not a parent of or legal guardian for a Patient;
    - A friend/family member of a Patient;
    - Health care professional (e.g. physician, nurse, etc.);
    - Scientific or medical researcher;
    - Advocate;
    - Person who works in rare disease (non-medical);
    - Member of the news media; or
    - Student in the health sciences
  - You represent and warrant that the information you provide when registering as a community member, and all information you subsequently provide regarding yourself and your registration, is true and accurate and not misleading. The Sites are intended for individual users; profiles of entities or organizations are not permitted.
  - Community Member Account: In connection with particular features of our Sites, you may be required or permitted to create an account and password. You are responsible for maintaining the confidentiality of your password for any of our Sites, and you are solely responsible for all activities that occur under your account.
  - No Children. Children (under the age of 13 in Brazil and the US or 16 in the EEA) are prohibited from registering as community members. By registering as a community member, you represent that you are age 13 or older (in Brazil and the US) and 16 or older (in case of EEA).
  - International Access. Our Sites are controlled and operated by us from our offices within the United States of America and are not intended to subject us to the laws or jurisdictions of any state, country, or territory other than the United States although the Sites may be compliant with such laws. If you do access and use any of our Sites outside the United States, you are responsible for complying with all applicable local, state, federal, national, provincial, foreign, and international statutes, treaties, regulations, rules, orders, and other laws (each, a “Law”) with respect to such access and use.

1. No Medical Advice
  The information, files, documents, text, photographs, images, audio, messages, and any materials accessed through or made available for use or download through any of our Sites (“Content”), including, without limitation, any information about diseases, conditions, treatments, medicines or personal experiences, are for informational purposes only. The Content is not intended to be and is not a substitute for professional medical advice, diagnosis, or treatment. Nothing on our Sites should be construed as the giving of advice or the making of a recommendation regarding any decision or action related to your health or the health of others. We do not monitor or authenticate the information contained on our Sites for accuracy, safety, or reliability. Inclusion of Content on any of our Sites does not mean that rareLife solutions supports or recommends a specific treatment, drug, physician, test, or other information on our Sites. Any reliance on such Content is solely at your own risk. You should consult a doctor or other qualified healthcare professional regarding any questions you have about your health or before making any decisions related to your health or wellness. If you are a doctor or other qualified healthcare professional, you should not offer any medical advice or treatment on our Sites, nor should you allow the content of our Sites to substitute for your own medical judgment, which you should exercise in evaluating the information on any of our Sites. Please thoroughly review the information provided on our Sites before deciding whether any of the products, services or treatments mentioned are right for you or others.
  
  WE CARE GREATLY ABOUT THE WELL-BEING OF OUR MEMBERS, SO PLEASE CALL YOUR DOCTOR OR 911 IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY OR FEEL YOUR LIFE IS IN DANGER. ALL MENTIONS OF SUICIDE, SUICIDAL THOUGHTS, SELF-HARM, OR ANY OTHER BEHAVIOR THAT CAUSES CONCERN ABOUT A MEMBER’S IMMEDIATE SAFETY AND VIEWED BY RARELIFE SOLUTIONS WILL RECEIVE A RESPONSE DIRECTING THE MEMBER TO THE FOLLOWING SUICIDE HELPLINES:
  
  National Suicide Prevention Lifeline (US): 1-800-273-8255, https://suicidepreventionlifeline.org/
  
  Samaritans (UK): 116 123, http://www.samaritans.org/
  
  International directory of helplines: http://www.befrienders.org/directory

1. Appropriate and Lawful Use of Site
  - You agree not to use any of our Sites or the content available on our Sites:
    1. In violation of these Terms or any Law;
    2. To post or upload information or content that is false, inaccurate, or misleading;
    3. To transmit or display any material that is illegal, abusive, graphically distressing, inflammatory, profane, threatening, hateful, tortious, defamatory, discriminatory, obscene, sexually explicit or contains pornography, libelous, invasive of another’s privacy, hateful, or otherwise objectionable or offensive, or to harass or harm rareLife solutions, another entity or another individual;
    4. To infringe any copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy of any party;
    5. To transmit any unsolicited or unauthorized advertising or promotional materials;
    6. To transmit any material that contains adware, malware, spyware, software viruses, or any other harmful code;
    7. To impersonate any person or entity, or otherwise misrepresent your affiliation with a person or entity;
    8. To interfere with or disrupt any of our Sites or any software, hardware, telecommunications equipment or networks used by us;
    9. Disparage or injure the reputation or goodwill of rareLife solutions, or any of its officers, directors, or employees;
    10. Further or promote any criminal activity or enterprise or provide instructional information about illegal activities;
    11. Obtain or attempt to access or otherwise obtain any materials or information through any means not intentionally made available or provided for through our Sites or
    12. Interfere with other community members’ use and enjoyment of our Sites (for example, by spamming, soliciting or overly promoting personal interests).

1. - You are prohibited from violating or attempting to violate the security of any of our Sites, including, without limitation:
    1. Accessing data not intended for such community member or logging onto a server or an account which the community member is not authorized to access;
    2. Attempting to probe, scan or test the vulnerability of a system or network or to breach security or authentication measures without proper authorization; or
    3. Accessing or using any Site or any portion thereof without authorization, in violation of these Terms or in violation of Law. Violations of system or network security may result in civil or criminal liability. We will investigate occurrences that may involve such violations and may involve, and cooperate with, law enforcement authorities in prosecuting people who are involved in such violations. You agree not to use any device, software or routine to interfere or attempt to interfere with the proper working of any Site or any activity being conducted on any Site.

1. - We reserve the right to investigate and take appropriate legal action against anyone who, in our sole discretion, violates these Terms, including without limitation, removing the offending content from our Sites, suspending or terminating the access of such violators to our Sites and reporting violations to the law enforcement authorities.
  - Our Sites may feature interactive tools, journals, personal pages, message boards and other public forums where community members with similar interests or medical conditions can share information and support one another or where users can post questions for others to answer (“Interactive Areas”). By using such features, you acknowledge and agree that the information contained therein, including responses from medical professionals, is intended solely for general informational purposes and are not intended nor implied to be a substitute for professional medical advice relative to any specific medical condition. We do not guarantee monitoring or authentication of the information contained in any such Interactive Areas. By submitting communications or content to any Interactive Area, you agree that such submission is non-confidential for all purposes. You agree that following actions shall constitute a material breach of these Terms: impersonating another person or entity, misrepresenting yourself or your credentials, allowing any other person or entity to use your identification for posting or viewing Content, posting excessively or “spamming” or “flaming” or “inciting discord” or “selling products or remedies” or otherwise engaging in any other conduct that restricts or inhibits any other person from using or enjoying the Interactive Area.

1. Related Agreements and Policies.
  - Privacy Policy. You agree that we may use any information we obtain about you in accordance with our Privacy Policy, which may be found here (the “Privacy Policy”). These Terms incorporate by reference the terms and conditions of the Privacy Policy.
  - Code of Conduct. You agree to abide by the code of conduct, which outlines acceptable use and participation on our Sites, including when certain activities or communications may result in suspension or termination of your access to our Sites.
  - Additional Terms. Some of our Sites, or portions of our Sites, may be subject to additional terms (“Additional Terms”), which will be described in separate policies posted on the applicable Sites. The Additional Terms will supplement these Terms and will control over any conflict between the Additional Terms and these Terms with respect to the specific Sites, or portions thereof, subject to the Additional Terms.

1. Our Content and Proprietary Rights.
  - As between you and us, we own all content developed or acquired by us (“Our Content”), including but not limited to our selection and arrangement of Third-Party Content (as defined below), but excluding Third Party Content itself. Our Content is protected under United States and international copyright Laws and is subject to other intellectual property and proprietary rights and Laws. In addition, the “rareLife solutions” and “onevoice” name and logo, as well as certain other of the names, logos, and materials displayed in or through our Sites constitute registered and unregistered trademarks, trade names, service marks, or logos (collectively, the “Marks”) of us, our content providers, partners, collaborators, endorsers or other entities. Ownership of the Marks and the goodwill associated with them remains with us or those other entities. We authorize you to view or download a single copy of a reasonable amount of Content from our Sites, solely for your personal, noncommercial use. You are not authorized to use any of Our Content or the Marks other than as expressly provided in these Terms or as expressly licensed to you. You must abide by all rights notices, information, or restrictions contained in or attached to any of Our Content and must not remove any trademark, copyright, or other notice from our Sites or any of Our Content.
  - The technology and software underlying our Sites is our property (the “Software”). You agree not to copy, modify, create a derivative work of, reverse engineer, reverse assemble or otherwise attempt to discover any source code, sell, assign, sublicense, or otherwise transfer any right in the Software. Any rights not expressly granted herein are reserved by rareLife solutions.

1. Third Party Content (Including Your Content).
  - No Responsibility for Third Party Content. Under no circumstances will we be liable in any way for any content or materials of any third parties (including community members), including, but not limited to, for any errors or omissions in any content, or for any loss or damage of any kind incurred as a result of the use of any such content (collectively, “Third Party Content”) on our Sites. We do not control any Third-Party Content on our Sites and do not guarantee the availability or display of any Third-Party Content. We reserve the right to remove any Third-Party Content at any time in our sole discretion. Any opinions, advice, statements, views, positions, services, offers, or other Third-Party Content expressed or made available on our Sites are solely those of the respective authors or distributors, and do not necessarily reflect our opinions, views, or position. We do not endorse any particular products, services or treatments. We take no responsibility and assume no liability for any Third-Party Content. You use or rely on Third Party Content at your own risk.
  - Your Content. If you submit information or material through any means (collectively, “Your Content”) to any of our Sites, you, to the extent you have any rights in such information or material, grant us a nonexclusive, royalty-free, worldwide, perpetual, irrevocable, and fully sublicensable right to use, reproduce, modify, adapt, publish, translate, create derivative works from, distribute, and display Your Content throughout the world in any media. You grant us and our sublicensees the right to use the name, screen name, city or zip code, and other biographical information that you submit in connection with Your Content, if we or they choose. You represent and warrant that:
    1. You own or otherwise control all of the rights to the content that you post, including any intellectual property or other proprietary rights other than content that you clearly identify as Third-Party Content, e.g., links to third party websites;
    2. Your Content is accurate;
    3. Neither Your Content nor your posting or submission of Your Content violates any of these Terms, including without limitation the prohibitions on use of our Sites set forth above; and
    4. Neither Your Content nor your posting or submission of Your Content will cause injury to any person or entity, including any privacy or security risk. rareLife solutions has no responsibility for any of Your Content or the consequences of your sharing any of Your Content with others. We have the right but not the obligation to monitor and edit or remove any content from our Sites in our sole discretion without notice or consent.

1. - Notice and Takedown Procedures / Copyright Agent If you believe any materials accessible on or from any of our Sites infringe your copyright, you may request removal of those materials (or access thereto) from any of our Sites by contacting our copyright agent (identified below) and providing the following information:
    - Identification of the copyrighted work that you believe to be infringed.
    - Identification of the material that you believe to be infringing and its location. Please describe the material and provide us with its URL or any other pertinent information that will allow us to locate the material. Your name, address, telephone number and (if available) e-mail address.
    - A statement that you have a good faith belief that the complained of use of the materials is not authorized by the copyright owner, its agent, or the law.
    - A statement that the information that you have supplied is accurate, and indicating that “under penalty of perjury,” you are the copyright owner or are authorized to act on the copyright owner’s behalf.
    - A signature or the electronic equivalent from the copyright holder or authorized representative. Our agent for copyright issues relating to this website is the contact indicated at the end of these Terms of Use.
    - If any content that you submitted has been removed as a result of a notification as described above and you believe that such content was posted lawfully, please contact us about our counter-notification procedure through which you can dispute the allegation and request re-posting of the content at issue.
    - Feedback. If Your Content includes any suggestions, ideas, or other feedback about us, our Sites, or our products, (your “Feedback”): (i) you grant us all necessary rights to use your Feedback; (ii) you acknowledge and agree that we are free to use and otherwise act on your Feedback with no financial, credit, or other obligation whatsoever to you, but we are not obligated to use your Feedback in any way; (iii) you acknowledge and agree that we are not obligated to keep your Feedback confidential other than as set forth in the Privacy Policy; and (iv) you represent that your Feedback is entirely your original work.

1. Third Party Services and Sites. Portions of our Sites may allow you to use third party products and services, which may include without limitation social networking services, and our Sites may contain links to third party websites or resources (such products, services, websites, and resources, collectively “Third-Party Services”). We are not associated with such Third-Party Services. Your use of Third-Party Services is subject to the license agreements, terms and conditions, privacy policies, and other policies and agreements applicable to such Third-Party Services. We do not approve or endorse any Third-Party Services, their content, or any views expressed on any Third-Party Service, nor are our Sites approved or endorsed by any Third-Party Services. rareLife solutions has no responsibility to you for any Third-Party Services.

1. Linking to Our Sites. If you wish to link to any of our Sites, you may include an active link on any website you control directing a browser to the home page of that Site, provided that you agree to remove the link at any time upon our request. You may not link to or otherwise provide access to any of our Sites in any way that: (a) alters the look, feel, or functionality of any aspect of our Sites; or (b) in any way that disparages our Sites or products or that could injure the reputation or goodwill of rareLife solutions or any of its products.

1. Infringement Claims. We respect the intellectual property rights of others. Accordingly, we have a policy of removing Third Party Content that violates copyright, trademark, or other intellectual property Laws, suspending access to all or any portion of our Sites to any community member who uses our Sites in violation of any such Law, and/or terminating in appropriate circumstances access to our Sites and the account (if any) of any community member who uses our Sites in violation of any such Law. If you believe your copyright, trademark, or other intellectual property right is being infringed by a user of any of our Sites, please provide written notice to us at [email protected]

1. Indemnity and Release. You agree that you will release, indemnify and hold harmless us, our affiliates (if any), and our or their respective content providers, suppliers, distributors, or customers, and any of our or their respective officers, directors, employees, contractors, representatives, or agents (collectively, the “rareLife solutions Parties”) for any and all claims, actions, losses, damages and expenses (including attorneys’ fees) arising out of or resulting from: (i) your use of our Sites, (ii) Your Content, (iii) your connection to our Site, (iv) your violation of these Terms, (v) or your violation of any rights of another.

1. Disclaimer of Warranties. YOU UNDERSTAND AND AGREE THAT USE OF ANY OF OUR SITES, OUR CONTENT, ANY THIRD-PARTY CONTENT, OR ANY THIRD-PARTY SERVICES IS AT YOUR SOLE RISK. OUR SITES ARE PROVIDED ON AN “AS IS” AND “AS AVAILABLE” BASIS. THE RARELIFE SOLUTIONS PARTIES DISCLAIM ALL REPRESENTATIONS AND WARRANTIES OF ANY KIND, WHETHER EXPRESS, IMPLIED, OR STATUTORY, WITH RESPECT TO OUR SITES, OUR CONTENT, ANY THIRD PARTY CONTENT, OR ANY THIRD PARTY SERVICES (INCLUDING, BUT NOT LIMITED TO, THE IMPLIED OR STATUTORY WARRANTIES OF MERCHANTABILITY, FITNESS FOR A PARTICULAR USE OR PURPOSE, TITLE, QUIET ENJOYMENT, AND NON-INFRINGEMENT AND ANY WARRANTIES ARISING OUT OF COURSE OF DEALING, USAGE, OR TRADE). IN PARTICULAR, THE RARELIFE SOLUTIONS PARTIES DO NOT REPRESENT OR WARRANT THAT ANY INFORMATION OR OTHER CONTENT OBTAINED OR VIEWED BY YOU AS A RESULT OF YOUR USE OF OUR SITES WILL BE ACCURATE OR RELIABLE, OR THAT YOUR ACCESS TO OUR SITES OR CONTENT WILL BE UNINTERRUPTED OR ERROR-FREE. THE RARELIFE SOLUTIONS PARTIES DO NOT WARRANT THAT FILES AVAILABLE FOR DOWNLOAD WILL BE FREE OF VIRUSES, WORMS, TROJAN HORSES OR OTHER DESTRUCTIVE PROGRAMMING. YOU ARE RESPONSIBLE FOR IMPLEMENTING PROCEDURES SUFFICIENT TO SATISFY YOUR NEEDS FOR DATA BACK UP AND SECURITY. THE RARELIFE SOLUTIONS PARTIES DISCLAIM ALL EQUITABLE INDEMNITIES.

1. Limitation of Liability. YOU UNDERSTAND AND AGREE THAT TO THE EXTENT PERMITTED UNDER APPLICABLE LAW, IN NO EVENT WILL ANY OF THE RARELIFE SOLUTIONS PARTIES BE LIABLE UNDER ANY THEORY OF LIABILITY (WHETHER IN CONTRACT, TORT, STATUTORY, OR OTHERWISE) FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, CONSEQUENTIAL, PERSONAL INJURY/WRONGFUL DEATH, PUNITIVE, OR EXEMPLARY DAMAGES, (EVEN IF SUCH PARTIES WERE ADVISED OF, KNEW OF OR SHOULD HAVE KNOWN OF THE POSSIBILITY OF SUCH DAMAGES), INCLUDING BUT NOT LIMITED TO AS A RESULT OF: (A) YOUR USE OF OR INABILITY TO USE ANY OF OUR SITES, (B) ANY OF OUR CONTENT, ANY THIRD PARTY CONTENT, OR ANY THIRD PARTY SERVICES AVAILABLE THROUGH ANY OF OUR SITES OR (C) ANY LOSS OF DATA. SHOULD ANY RARELIFE SOLUTIONS PARTIES BE FOUND TO BE LIABLE TO YOU OR ANY THIRD PARTY NOTWITHSTANDING THE FOREGOING, SUCH LIABILITY WILL NOT EXCEED $100.00 IN THE AGGREGATE.

1. Exclusions and Limitations. Some jurisdictions do not allow the exclusion of certain warranties or the limitation or exclusion of liability for incidental or consequential damages. Accordingly, some of the above limitations and disclaimers may not apply to you. To the extent that we may not, as a matter of applicable Law, disclaim any implied warranty or limit our liabilities, the scope and duration of such warranty and the extent of liability of the rareLife solutions Parties will be the minimum permitted under such applicable Law.

1. Refusal of Service; Modification of Sites; Termination. We reserve the right to refuse service, disable or prohibit logins, remove or edit content (including Third Party Content), limit access to content, or modify or discontinue any of our Sites or features on any of our Sites in our sole discretion. We reserve the right to charge for membership and/or to provide existing or additional optional services for a fee. We may terminate, suspend, or modify your access to all or part of any of our Sites, without notice, if you violate these Terms or you engage in any conduct that we, in our sole and absolute discretion, believe is in violation of any applicable Law or is otherwise harmful to the interests of us, any other community member of any of our Sites, or any third party.

1. Modifications to Terms. We may update or change any of the terms and conditions contained in these Terms at any time and in our sole discretion, by posting on the “Terms of Use” page of our Sites or emailing to you at the email address you provided to us a change notice or a revised set of Terms. If any modification is unacceptable to you, your only recourse is to terminate your use of our Sites. Your continued use of our Sites following our posting or emailing of a change notice or revised Terms as provided in this section will constitute your binding acceptance of the change.

1. Disputes. These Terms and the relationship between us will be governed by the Laws of the State of Connecticut as applied to agreements made, entered into, and performed entirely in Connecticut. All lawsuits arising out of or relating to these Terms or your use of any of our Sites will be brought in the Federal or State courts located in Connecticut. We and you hereby irrevocably submit to the exclusive personal jurisdiction of such courts for such purpose and waive any objection to such courts on any basis, including without limitation improper venue or inconvenience of the forum. You agree that regardless of any statute or law to the contrary, any claim or cause of action arising out of or related to use of our Sites, or these Terms must be filed within one (1) year after such claim or cause of action arose or be forever barred. You may only resolve disputes with us on an individual basis and may not bring and expressly waive bringing a claim as a plaintiff or a class member in a class, consolidated, or representative action. Class arbitrations, class actions, private attorney general actions, and consolidation with other arbitrations are not allowed. YOU HEREBY WAIVE YOUR RIGHT TO A JURY TRIAL IN ANY CLAIM OR CAUSE OF ACTION ARISING OUT OF YOUR USE OF OUR SITES OR THESE TERMS.

1. Electronic Communications Notice. When you use our Sites or send emails to us, you are communicating with us electronically. You consent to receiving communications from us electronically. We may communicate with you by email or posting notices on the applicable Site. You agree that all agreements and other communications we provide to you electronically satisfy any legal requirement that such communications be in writing. In order to access any such communications, you must have a computer or other Internet-enabled device. In order to retain copies of any such communications, you must have a printer or data storage device. If you have a printer, you may print paper copies of any such communications for your own use.

1. Mobile Site. Our Sites may include certain services that are available via a mobile device, including (i) the ability to upload content to our Sites via a mobile device and (ii) the ability to browse our Sites from a mobile device (collectively, the “Mobile Site”). To the extent you access our Service through a mobile device, your wireless service carrier’s standard charges, data rates and other fees may apply. In addition, downloading, installing, or using certain elements of the Mobile Site may be prohibited or restricted by your carrier, and not all aspects of the Mobile Site may work with all carriers or devices. By using the Mobile Site, you agree that we may communicate with you regarding rareLife solutions by electronic means and that certain information about your usage of the Mobile Site may be communicated to us.

1. Miscellaneous. These Terms, together with the Privacy Policy, Code of Conduct and any Additional Terms constitute the entire and exclusive agreement between us with respect to their subject matter, and govern your use of our Sites, superseding any prior agreements or negotiations between us with respect to that subject matter. Our failure to exercise or enforce any right or provision of these Terms will not constitute a waiver of such right or provision. If any provision of these Terms is found by a court of competent jurisdiction to be invalid, you nevertheless agree that the court should endeavor to give effect to our intentions as reflected in the provision, and that the other provisions of these Terms remain in full force and effect. The section titles in these Terms are for convenience only and have no legal or contractual effect.

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