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Frequently Asked Questions

What is RareShare?

RareShare is an online social hub for those affected by rare medical disorders. Whether you are a patient, family member, friend of the family, or healthcare professional, you are invited to join RareShare. Our goal is to become the #1 aggregator of information about rare disorders on the Web. We're still young, but we hope you decide to join us as we grow.

Why should I use RareShare?

You should use RareShare because you are interested in connecting with others that are affected by the same medical disorders. That's the goal of the Site and we hope you find it useful.

How much does it cost to join?

Joining RareShare is absolutely free and takes less than a minute. Click here to sign up today.

If RareShare is free to join, how do you make money to support the Site?

RareShare is a part of the Rare Genomics Institute, an international non-profit that provides access to cutting edge research technologies, physicians, and scientists across the globe.

Why are changes moderated?

By moderating changes, we believe that we can create a safer environment for our members to share information and experiences about rare medical disorders. In other words, we are trying to prevent spammers from infiltrating the site.

What happens if I cannot find my community?

We are constantly working on adding new communities to RareShare. If your community is not listed, please send an email to communities@rareshare.org. We will do our best to get it up right away.

How do I contact RareShare?

We always enjoy hearing from our members and those interested in providing feedback about the Site. Please send all inquiries to info@rareshare.org. While we may not be able to respond to all emails right away, we promise that your email will be read by a member of the RareShare staff. Please do not send any medical related questions, as our policy does not allow us to respond to those.

Terms of Service

Revision date October 27, 2016
Effective date May 16, 2008

Welcome to RareShare.org ("RareShare")! We are built on a premise that sharing information is good, especially when it comes to information about rare diseases. The more you share the more you have an opportunity to help others whose lives have been touched by rare disease. Since rare diseases are not common, they are also often not well understood. By joining our community of support and sharing information about your experience, you will help others, including researchers, better understand your disease.

Below are the Terms of Service, and in the right column, you will find a summary that will help you understand these terms, although the summary is not legally binding.

The following terms constitute an agreement between you and Rare Genomics Institute, Inc. (“Rare Genomics” or “we” or “us”) the operator of RareShare. RareShare, described below, provides users with a wide array of services including, without limitation, news, reference resources, personalized content, and communication platforms (collectively, the "Services"). The Services are provided to users of RareShare subject to the following Terms of Service (the "Terms"), the most current version of which is located at the bottom of any page of RareShare. By using the Services, you the user (“user” or “you”) agree to these Terms, whether or not you are a registered member of RareShare or just a casual visitor. These Terms govern your use of the Services and create a binding legal agreement that we may enforce against you in the event of a violation. If you do not agree to all of these Terms of Service, do not use the Services. To the extent you register with RareShare as a member, then in addition to the terms that are applicable to all users of RareShare, the terms that apply only to members shall apply to you too as well.

IN OTHER WORDS:

These Terms of Service apply to anyone visiting RareShare.

Account Registration

You must register an account with RareShare to access all of the Services. Registration requires you to provide us with information about yourself, which include your name, birthdate, gender, picture, email address, profession, relationship to a rare disease patient, country, state, city, zip code, home community, a statement about yourself, your website URL, your blog URL, and other information specified in the registration form ("Registration Information"), and to select a username and password that will be associated with your account. You agree that your Registration Information is true, accurate, current, and complete, and you will promptly update your Registration Information as necessary so that it continues to be true, accurate, current and complete. We may attempt to verify the accuracy of the Registration Information that you have provided and update it as necessary. 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.

IN OTHER WORDS:

To fully use these services, you need to create an account and provide personal information, without violating the rights of others.

Protection and Use of Your Membership Password and Login

You are solely responsible for maintaining the confidentiality and security of your RareShare account username and password and you may not permit another person to use your username and password to access the Services. You are solely responsible for the control of your account access information and all activity that occurs under your account. If you believe that the security of your account information has been compromised, you should immediately change your username and password through the account settings feature or notify us at info@rareshare.org and we will assist you. You grant Rare Genomics and all other persons or entities involved in the operation of RareShare the right to transmit, monitor, retrieve, store, and use your information in connection with the operation of RareShare. Rare Genomics cannot and does not assume any responsibility or liability for any information you submit, or your or third parties' use or misuse of information transmitted or received using RareShare tools and services. Rare Genomics shall have no liability for any unauthorized access to or use of your account information.

IN OTHER WORDS:

Be responsible and protect your account information.

Restrictions on Eligibility

With your use of RareShare, you consent to the terms contained in this policy. If you do not consent to all of the terms in these Terms of Service and Privacy Policy, you must not use RareShare. International users that do not agree with the Privacy Policy and/or children under the age of 13 must not use RareShare.

IN OTHER WORDS:

Please don’t use this site if you don’t fully agree to the terms in these Terms of Service and the Privacy Policy.

RareShare Does Not Provide Medical Advice

The contents of the RareShare, such as text, graphics, images, information obtained from RareShare affiliates or licensors, and other material contained on RareShare, including information posted by users ("Content") are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on RareShare!

If you think you may have a medical emergency, call your doctor or 911 immediately. Rare Genomics does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on RareShare

IN OTHER WORDS:

RareShare does not give medical advice. Contact your physician if you have medical concerns. Call 911 in an emergency!

User Assumption of Risk

Reliance on any information provided by Rare Genomics, Rare Genomics employees, Rare Genomics volunteers, or others appearing on RareShare at the invitation of Rare Genomics, or other User or visitor to RareShare is solely at your own risk.

RareShare may contain health- or medical-related materials that are sexually explicit. Some users may find Content to be emotionally difficult. If you find these materials offensive, you may not want to use RareShare.

IN OTHER WORDS:

Use caution when using RareShare. Know your limits, you may consider some content to be difficult.

Privacy Policy

The RareShare Privacy Policy, located at Privacy Policy Page , provides information about our collection, use and disclosure of information about users of the Services. In particular, refer to the Privacy Policy for the policies concerning Children Users and International Users. By accessing and using the Services, you agree that you have read the terms of the Privacy Policy and acknowledge, agree, and accept that the Privacy Policy forms an integral part of these Terms and Conditions and are incorporated by reference.

IN OTHER WORDS:

Read the Privacy Policy. It explains how we handle your information.

Acceptable and Lawful Use of RareShare by Members

Members shall not post or upload any information or other content on RareShare 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, abusive, embarrassing to any other person or contains pornography, as determined by Rare Genomics in its sole discretion. Members shall not interfere with other members' use and enjoyment of RareShare (for example, by harassing, threatening or stalking another participant of a chat room, forum, or threaded message, including the use of expressions of bigotry, racism, hatred, or profanity). Members may not use RareShare 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. If you observe activity that violates these terms, contact Rare Genomics at info@rareshare.org

Additionally, in consideration of being allowed to use RareShare, you shall not:

  1. Post advertisements or solicitations of business, chain letters, spam (the same Content posted more than once), or pyramid schemes;
  2. Disrupt the normal flow of dialogue, or post comments that are not related to the topic being discussed after receiving a warning;
  3. Impersonate another person or provide other inaccurate information;
  4. Allow other person or entity to use your information to post or view comments ; or
  5. Engage in any other conduct that restricts or inhibits another from using or enjoying RareShare.
IN OTHER WORDS:

You cannot use RareShare to do illegal or other irresponsible things. Act reasonably and responsibly when using Rareshare

Rare Genomics reserves the right, but is not obligated to perform the following activities regarding RareShare:

  1. Record, store, monitor, analyze, edit, delete, or disclose any communication or information in RareShare or RareShare Communities for the improvement of services, or enhancement of RareShare, or if such communication violates these terms.
  2. Investigate complaints and allegations that a user’s activities violate these terms and determine in its sole discretion to remove or request the removal of the communication.
  3. Remove communications which are abusive, illegal, or disruptive, hateful conduct, or that otherwise fail to conform with these terms, at the sole discretion of Rare Genomics.
  4. Terminate access of a user to RareShare upon any breach of these terms.
IN OTHER WORDS:

We may manage RareShare use and content as we see fit. But, we are not responsible for policing RareShare.

Rare Genomics, its licensors, partners, or affiliate have no liability or responsibility to users of RareShare or any other person or entity for performance or nonperformance of the aforementioned activities.

Use of RareShare by Members and Non-Members: You agree that you will not post or upload any material that contains software viruses or any other computer code, files or programs designed to interrupt, destroy or limit the functionality of any computer software or surreptitiously intercept or expropriate any system, data or personal information contained on RareShare. You may not use any robot, spider, scraper, or other automated means to access RareShare or Content or Services provided on RareShare for any purposes. You shall not attempt to make RareShare unavailable through denial-of-service attacks or similar means. You shall not use contact information provided by members, or collect information about RareShare members, to facilitate the sending of unsolicited bulk communications.

IN OTHER WORDS:

Please don’t interfere with our service.

Commercial Use

The Content and information contained in RareShare may only be used for commercial or research purposes with the express and written approval by Rare Genomics. Organizations, companies, and/or businesses should not use RareShare without express consent from Rare Genomics if the use is intended for commercial purposes.

IN OTHER WORDS:

You may not use RareShare for your business.

Copyright - Use of Content

Rare Genomics authorizes you to view or download a single copy of the material on RareShare solely for your personal, noncommercial use if you include the copyright notice located at the end of the material, for example: "© 2016, Rare Genomics Institute, Inc. All rights reserved" and other copyright and proprietary rights notices that are specifically noted in the Content. Any special rules for the use of certain licensed software and other items accessible on the RareShare may be noted elsewhere on RareShare and are incorporated into these Terms and Conditions by reference.

The Content is protected by copyright under United States law. Title to the Content remains with Rare Genomics or its licensors. Any use of the Content not expressly permitted by these Terms and Conditions is a breach of these Terms and Conditions and may violate copyright, trademark, or other laws. Content and features are subject to change or termination without notice.

All rights not expressly granted herein are reserved to Rare Genomics and its licensors. Rare Genomics may exercise editorial discretion at any time regarding the Content of RareShare.

If you violate any of these Terms and Conditions, your permission to use the Content automatically terminates and you must immediately destroy any copies you have made of any portion of the Content.

IN OTHER WORDS:

Don’t use our copyrighted content without our permission.

User Submissions - License

RareShare includes community areas, such as forums and member areas, where members may post messages, images, and other Content. If you are a member, you (or the author) own the copyright in the messages, media like a photo or video, and other content you post in the RareShare Communities. By uploading such content, you:

  1. grant RareShare and our affiliates a perpetual, non-exclusive, sublicensable, worldwide, royalty-free license to use, copy, print, display, reproduce, modify, publish, post, transmit and distribute and create derivative works of the media and any material included in the media, subject to the terms of the Privacy Policy, and
  2. certify that any person pictured or discussed in the submitted media or content (or, if a minor, his/her parent/legal guardian) authorizes Rare Genomics to use, copy, print, display, reproduce, modify, publish, post, transmit and distribute the media and any material included in such media. If you are providing Content as a professional, you further certify that you have obtained all necessary written authorizations and the approval of your organization to provide content. Do not upload pictures or Content of individuals if you have not received their express consent.

While some areas in the RareShare Communities may be monitored periodically for topicality, Rare Genomics has no obligation to prescreen content or uploaded media 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 content for any reason.

IN OTHER WORDS:

You are giving us a license to use your copyrighted works. Ask permission before posting information about others, or using the copyrighted content of other people.

Personal Information of Others

You agree not to disclose to any person or entity personally identifiable information about other members that you learn using RareShare (whether posted in the RareShare Communities by a member or emailed to you by a member) without the express consent of such member. Any agreement between Users of RareShare are strictly between the users and do not involve Rare Genomics.

IN OTHER WORDS:

Ask permission before sharing information about other users that you learned on RareShare.

Links to Other Websites

RareShare may contain links to other websites that are not under the control of Rare Genomics. Inclusion of any link does not imply endorsement by Rare Genomics and Rare Genomics is not responsible for the content of linked content.

IN OTHER WORDS:

Some people may post links; we are not responsible for those.

Membership Termination

You agree that Rare Genomics may, with or without cause, immediately terminate your RareShare membership and access without prior notice. Without limiting the foregoing, the following may lead to a termination by Rare Genomics of a member's membership and use of RareShare:

  • breaches or violations of this Agreement or other incorporated agreements or guidelines,
  • requests by law enforcement or other government agencies,
  • a request by you (self-initiated membership cancellation),
  • unexpected technical issues or problems, and
  • extended periods of inactivity.

Rare Genomics has no obligation to maintain or store information or data that you have posted on or uploaded to RareShare.

IN OTHER WORDS:

We can terminate your membership for any reason.

Disclaimer of Warranties

The advice, recommendations, information, and conclusions posted or emailed by other members of RareShare are not in any way vetted, approved or endorsed by Rare Genomics. The use of RareShare and the Content is at your own risk.

When using RareShare, information will be transmitted over a medium that may be beyond the control and jurisdiction of Rare Genomics and its suppliers. Accordingly, Rare Genomics assumes no liability for or relating to the delay, failure, interruption, or corruption of any data or other information transmitted in connection with use of RareShare.

RareShare and the Content are provided on an "as is" basis. Rare Genomics, ITS LICENSORS, AND ITS SUPPLIERS, TO THE FULLEST EXTENT PERMITTED BY LAW, DISCLAIM ALL WARRANTIES, EITHER EXPRESS OR IMPLIED, STATUTORY OR OTHERWISE, INCLUDING BUT NOT LIMITED TO THE IMPLIED WARRANTIES OF MERCHANTABILITY, NON-INFRINGEMENT OF THIRD PARTIES' RIGHTS, AND FITNESS FOR PARTICULAR PURPOSE. Without limiting the foregoing, Rare Genomics, its licensors, and its suppliers make no representations or warranties about the timeliness or accuracy of the content.

IN OTHER WORDS:

We are not responsible if something goes wrong. RareShare may go down, stop working or someone may do something that you don’t like. We are not responsible.

Limitation of Liability

In no event shall Rare Genomics, its partners, contributors, licensors, its suppliers, affiliates, or any third parties mentioned on RareShare be liable for any damages (including, without limitation, incidental or consequential damages, personal injury/wrongful death, lost profits, or damages resulting from lost data or business interruption) resulting from the use of or inability to use RareShare or the Content, whether based on warranty, contract, tort, or any other legal theory, and whether or not Rare Genomics, its partners, contributors, licensors, its suppliers, affiliates, or any third parties mentioned on RareShare are advised of the possibility of such damages. Rare Genomics, its licensors, its suppliers, or any third parties mentioned on RareShare shall not be liable for any damages. Rare Genomics, its licensors, its suppliers, or any third parties mentioned on RareShare are not liable for any personal injury, including death, caused by your use or misuse of RareShare or its content, including that which is accessible without registration. Any claims arising in connection with your use of RareShare or its content must be brought within one (1) year of the date of the event giving rise to such action occurred. Remedies under these Terms and Conditions are exclusive and are limited to those expressly provided for in these Terms and Conditions.

IN OTHER WORDS:

Again, we are not liable.

Indemnification

You agree to indemnify and hold harmless Rare Genomics, its officers, employees, volunteers, agents, subsidiaries, affiliates and other partners, from and against any and all claims, actions or demands, liabilities and settlements including without limitation, reasonable legal and accounting fees, resulting from, or alleged to result from, the media and/or content that you uploaded and/or your violation of any other terms of this Agreement.

IN OTHER WORDS:

If you violate these terms, you may be liable.

Fees

Membership with RareShare is currently free. Rare Genomics reserves the right to from time to time change the terms of this Agreement and charge for membership and/or to provide additional optional services for a fee.

IN OTHER WORDS:

We don’t currently charge a fee, but that could change.

Member Notices

If you register as a member, you agree that Rare Genomics 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 RareShare).

IN OTHER WORDS:

You might have mail from us!

Governing Law and Venue

This agreement shall be governed by the laws of the State of Maryland 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 RareShare, shall be litigated exclusively in the state or federal courts residing in the State of Maryland, and in no other court or jurisdiction. You hereby submit to the jurisdiction of the state and federal courts sitting in the State of Maryland.

IN OTHER WORDS:

We follow Maryland law.

Miscellaneous Terms

"RareShare" and the RareShare logo are trademarks of Rare Genomics. You agree not to display or use these trademarks in any manner without Rare Genomics' prior, written permission.

Rare Genomics may assign this agreement at any time to a third party, 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.

IN OTHER WORDS:

Please respect our trademarks.

Modifications to this Agreement

We reserve the right to modify this Agreement at any time, and without prior notice, by posting amended terms on RareShare. We encourage you to review this Agreement periodically for any updates or changes, which will have an updated effective date.

For any questions or comments, or to report violations of this Agreement, let us know, or contact us at info@rareshare.org

IN OTHER WORDS:

If we change these terms, we’ll post the update to RareShare. Check back regularly for changes. Please contact us if you have questions!

History of Updates and Changes to Terms of Service:

October 27, 2016 – Extensively and materially redrafted

May 16, 2008 - Created

Privacy Policy

Revision date October 27, 2016
Effective date May 16, 2008

Welcome to RareShare.org ("RareShare")! We are built on a premise that sharing information is good, especially when it comes to information about rare diseases. The more you share the more you have an opportunity to help others whose lives have been touched by rare disease. Since rare diseases are not common, they are also often not well understood. By joining our community of support and sharing information about your experience, you will help others, including researchers, better understand your disease.

Below is the Privacy Policy, and in the right column, you will find a summary that will help you understand these terms, although the summary is not legally binding.

If you have questions, we can be reached via e-mail at privacy@rareshare.org

The Privacy Policy is incorporated by reference into the Terms of Service between you and Rare Genomics Institute, Inc. (“Rare Genomics” or “we” or “us”) the operator of the RareShare.org ("RareShare").

This Privacy Policy outlines the type of information Rare Genomics collects from individuals who are casual visitors to RareShare and who have registered to join RareShare (collectively “you” or “user”) and how the information is shared with other parties, including, but not limited to, database operators, non-profits, clinics, and research institutions (“Collaborators”) and software companies and developers (“Vendors”), and other organizations, including advertisers (“Entities”). By accessing RareShare, You agree to the terms of this Privacy Policy, whether or not you are a registered member of RareShare or just a casual visitor. This Privacy Policy governs the use of your personal information. If you do not agree to all of these Terms of Service, do not use the Services.

IN OTHER WORDS:

This Privacy Policy explains how your information is or will be used on RareShare.

RareShare is a sharing web site that provides a platform for Users who want to share information to create collective knowledge about disease, health, and treatments. Sharing information about one’s health or disease is not for everyone, and we strive, with full transparency, to outline the benefits and risks of being part of this sharing site, including those related to privacy.

We reserve the right to modify this policy at any time and will notify users of material changes by providing a notice on the main page of the RareShare site and posting the amended Privacy Policy and terms on the RareShare website. We encourage Users to review this policy periodically for any updates.

IN OTHER WORDS:

RareShare is all about sharing information. Make sure you’re comfortable with that.

Eligibility to Use RareShare:

Minor Users

RareShare is not intended for use by minors. Children under the age of 18 are prohibited from registering as members. By registering as a member you represent that you are age 18 or older. If we believe that a minor has created an account, then that account will be removed. Be aware, Rare Genomics may not be able to remove every instance of information pertaining to a minor.

IN OTHER WORDS:

Don’t use RareShare if you are under 18 years old.

International Users

Rare Genomics makes no claims that information on RareShare is appropriate or may be downloaded outside of the United States. Personal information ("Information") that is submitted to RareShare will be collected, processed, stored, disclosed and disposed of in accordance with applicable U.S. law and our Privacy Policy. If you are a non-U.S. user, you acknowledge and agree that RareShare may collect and use your Information and disclose it to other entities outside your resident jurisdiction. 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. By providing us with your Information, you acknowledge that you consent to the transfer of such Information outside your resident jurisdiction. If you do not consent to such transfer, do not use RareShare.

IN OTHER WORDS:

If you are outside of the U.S., read carefully before consenting.

Purpose and Use of Collecting User Information

The information we collect is used to improve the content of RareShare, used to customize the content and/or layout of for each individual visitor, used to notify consumers about updates to RareShare. The Content that you provide on RareShare is also used by visitors to the site.

IN OTHER WORDS:

We collect information about you to improve the service of RareShare.

How We Collect User Information:

Information Passively Collected on RareShare

For each visitor to RareShare, our Web server automatically recognizes the consumer's domain name and e-mail address (where possible) through our statistics aggregator.

IN OTHER WORDS:

We collect log information to make the website better.

Information You Provide on RareShare

We collect the e-mail addresses of those who post messages to our bulletin board, the e-mail addresses of those who communicate with us via e-mail, aggregate information on what pages consumers access or visit, information volunteered by the consumer, such as survey information and/or, information that You or other Users post to the RareShare community (“Shared Information”), name, address, and other information requested for registering with RareShare (“Registration Information”).

IN OTHER WORDS:

We collect registration and user profile data. We also collect information that you post.

Information from Other Sources:

Information About Others

We may collect and store personal information about other people that you provide to us, such as their name, address, e-mail address, relationship to patient, and other narrative information that you decide to provide on RareShare. Examples of information provided about other people may include a family posting information about their relative with a rare disease or a recommendation by a doctor. However information is provided, the user is responsible for obtaining permission from the individual before sharing information.

IN OTHER WORDS:

If you post information about other people, we collect it.

Cookies and Use of Cookie Data

A cookie is a small data file that often includes an anonymous, unique token, which is sent to your browser from a website and may be stored on your computer’s hard drive. Two types of cookies are required to use RareShare:

  • Session Cookies are temporary cookies that remain only until you log out of the website or exit your web browser. Session Cookies do not store any Personal Information.
  • Persistent Cookies remain in the cookie file of your browser for much longer, even after you leave the Site. Persistent Cookies also do not store any Personal Information. Persistent Cookies store preferences that should persist from visit to visit.

We use cookies to store visitor preferences, record session information, such as customize Web page content based on visitors' browser type or other information that the visitor sends.

IN OTHER WORDS:

To remember you, our system will give you a cookie.

E-mail, Phone, Address, and Other Contact Information

If you do not want to receive e-mail from us in the future, please let us know by sending us an e-mail at privacy@rareshare.org or by clicking the “Unsubscribe” button, if one appears at the bottom of the e-mail.

If you supply us with your postal address on-line for a specific purpose, then you will only be contacted by mail for that intended purpose.

IN OTHER WORDS:

You can choose not receive communication from us, but we don’t recommend it.

How We Use and Share User Information

You should expect that all information you submit (even if it is not currently displayed), including registration information may be shared with the RareShare community, other users, and Collaborators, and Entities. Information may be shared for many reasons, including for research. To gain the most benefit out of participation in the RareShare community, users are encouraged to share health information in as much detail as you are comfortable. Remain mindful that the more information that is entered, the more likely it is that you could be located or identified.

We may use information that we collect about you to:

  • deliver services to users, manage and maintain RareShare, manage user accounts, or provide you with customer support and create the best tools and functionality for users;
  • perform research and analysis about your use of, or interest in RareShare services or content, or the services or content offered by others;
  • communicate with you by e-mail, postal mail, telephone and/or mobile devices about services that may be of interest to you either from Rare Genomics or other third parties or in a circumstance that we determine requires a member of the management team to directly contact you, such as in the case of an emergency;
  • develop and display content and advertising tailored to your interests on our site and other sites, including providing our advertisements to you when you visit other sites;
  • perform ad tracking and website or mobile application analytics;
  • where required by law or to comply with legal process;
  • enforce or exercise any rights in our terms and conditions;
  • perform functions as otherwise described to you at the time of collection;
  • transfer in a business transaction. In the event Rare Genomics goes through a business transition, such as a merger, acquisition by another organization, or sale of all or a portion of its assets, the User Information, including Personal Information, might be among the assets transferred. Users will be notified on RareShare of any such change in ownership or control of Personal Information; or
  • further advance the mission of Rare Genomics.
IN OTHER WORDS:

We share your information for many reasons, including research, that you provide when registering or that you post. Be cautious, the more you provide, the easier you can be identified by someone else.

If you provide information, make sure it is accurate.

Risks and Benefits of Sharing Information

While our goal is to help users improve health outcomes and gain knowledge, there are no certain benefits to using this website. However, paying close attention to your health and well-being, including treatments and symptoms, may be helpful in improving overall health. However, you do risk feeling uncomfortable with sharing information online. It is possible that you could be identified using information shared on RareShare (and/or in conjunction with other data sources). You could also be discriminated against or experience repercussions as a result of the information shared. For example, it is possible that employers, insurance companies, or others may discriminate based on health information. You should understand that anyone can register at RareShare and view the content that you post.

We encourage users to openly share information. However, we ask that you do not provide information that causes you to feel uncomfortable. If you choose to deactivate your account, Rare Genomics will not display or sell the data in that account as of the date of deactivation. Research conducted prior to the deactivation of your account will still include your data.

IN OTHER WORDS:

We will let you know when we use your information in a new way.

Ad Servers

We do not currently partner with or have special relationships with any ad server companies.

Development Collaborators

User registration information and content provided on RareShare is shared with content developers to improve RareShare. If provided, the following information may be shared:

  • Content
    Any information provided by you or provided by others and located on RareShare, which may include health related information, information on resources such as medical practitioners and studies, treatment information, or your own personal thoughts and responses.
  • Registration Information
    Information requested during registration, including information that may be used to identify you (“Identifiable Information”), includes: your name, birthdate, gender, picture, e-mail address, profession, relationship to a rare disease patient, country, state, city, zip code, home community, a statement about yourself, your website URL, your blog URL, and other information specified in the registration form ("Registration Information"), and a selected a username and password that will be associated with your account

Other Disclosures

From time to time, we may use customer information for new uses not previously disclosed in our privacy policy. New uses of information will be included on an updated version of this privacy policy and notice will be posted on RareShare.

How to Control Your Information Preferences:

Opt-Out

If our information practices change at some time in the future we will post the policy changes to RareShare to notify you of these changes. We may also provide you with the ability to opt out of these new uses. If you are concerned about how your information is used, you should routinely check the RareShare Privacy Policy.

IN OTHER WORDS:

You can opt out of some future sharing, but you may lose the value of the site.

Request Correction of Factual Information

We are committed to maintaining accurate information on RareShare. If information about you on RareShare is inaccurate, contact us at privacy@rareshare.org to have factual inaccuracies corrected.

IN OTHER WORDS:

We can help you correct inaccurate information about yourself.

Do Not Track Disclosure

Do Not Track ("DNT") is a privacy preference that users can set in their web browsers. DNT is a way for users to inform websites and services that they do not want certain information about their webpage visits collected over time and across websites or online services. We do not recognize or respond to any DNT signals.

IN OTHER WORDS:

We do not recognize Do Not Track signals.

Contact Us

If you feel that Rare Genomics is not following its stated information policy, you may contact us at privacy@rareshare.org

IN OTHER WORDS:

Please contact us if you have questions!

History of Updates and Changes to Privacy Policy:

October 27, 2016 – Extensively and materially redrafted

May 16, 2008 - Created

Cookies

Revision date Feburary 22, 2017

Welcome to RareShare.org ("RareShare")! We are built on a premise that sharing information is good, especially when it comes to information about rare diseases. The more you share the more you have an opportunity to help others whose lives have been touched by rare disease. Since rare diseases are not common, they are also often not well understood. By joining our community of support and sharing information about your experience, you will help others, including researchers, better understand your disease.

Below is the Cookie Policy

If you have questions, we can be reached via e-mail at info@rareshare.org

COOKIES

Cookies are small text files which are downloaded to your computer, tablet or mobile phone when you visit a website or application. The website or application may retrieve these cookies from your web browser (eg Internet Explorer, Mozilla Firefox or Google Chrome) each time you visit, so they can recognise you, remember your preferences and provide you with a more secure online experience.

Generally, cookies are very useful and are a common method used by almost every website you visit because they help to make your online experience as smooth as possible. For security reasons, many websites will not function at all without the use of cookies (or other similar technologies, such as "web beacons" or "tags").

Cookies generally do not hold any information to identify an individual person, but are instead used to identify a browser on an individual machine.

If you prefer, you can restrict, block or delete cookies by changing your browser settings but that may mean that the website won't work properly

For more information about cookies and their impact on you and your browsing visit http://www.aboutcookies.org.

TYPES OF COOKIES

Necessary cookies

These cookies are essential in helping you to make use of the features and services we offer on Rareshare. Without these cookies, the services you want to use cannot be provided. These cookies do not gather information about you that could be used to identify you, and they do not monitor or remember where you have been on the internet.

Functional cookies

These cookies allow us to provide you with a better online experience when you use our website. They do not gather or store any information which would allow us to identify you personally.

Performance cookies

Performance cookies help us to understand how our customers use our site, so we can keep our products and services relevant, easy to use and up to date. For example, we can see which products and services are most popular, identify when and where errors occur, and test different versions of a page in order to provide an improved online experience.

Sometimes, the services we use to collect this information may be operated by other companies on our behalf. They may use similar technologies to cookies, known as "web beacons" or "tags". These are anonymous and, as they are only used for statistical purposes, they do not contain or collect any information that identifies you.

Targeting cookies

We have relationships with carefully selected and monitored suppliers (third parties) who may also set cookies during your visit. The purpose of these cookies is "behavioural advertising" (also known as "behavioural targeting" or "remarketing"), which is a means of showing you relevant products and services based on what you appear to be interested in. Although these cookies can track your visits around the web they don't know who you are. Without these cookies, online advertisements you encounter will be less relevant to you and your interests.

MANAGING COOKIES

Most internet browsers allow you to erase cookies from your computer hard drive, block all cookies (or just third-party cookies) or warn you before a cookie is stored on your device.

Please note, if you choose to block all cookies, our site will not function as intended and you will not be able to use or access many of the services we provide. If you have blocked all cookies and wish to make full use of the features and services we offer, you will need to enable your cookies. You can do this in your browser (see below).

Rather than blocking all cookies, you can choose to only block third-party cookies which will still allow our website to function as intended.

How to manage cookies on your PC

To enable cookies on our website, follow the steps below.

Google Chrome

  1. Click "Tools" at the top of your browser and select "Settings".
  2. Click "Show advanced settings", scroll down to the section "Privacy" and click "Content Settings."
  3. Select "Allow local data to be set". To only acept first-party cookies, check the box next to "Block all third-party cookies without exception"

Microsoft Internet Explorer 6.0, 7.0, 8.0, 9.0

  1. Click "Tools" at the top of your browser and select "Internet Options", then click the "Privacy" tab.
  2. Check that the level of your privacy is set to Medium or lower, which will allow the use of cookies in your browser.
  3. If set above medium level it will prevent the use of cookies.

Mozilla Firefox

  1. Click "Tools" at the top of your browser and select "Options".
  2. Then select the "Privacy" icon.
  3. Click the "Cookies" and select "Allow pages to create a cookie."

Safari

  1. Click the gear icon at the top of your browser and select "Settings".
  2. Click the "Privacy" tab, then select the option "Disable the use of cookies by third parties and advertising cookies."
  3. Click "Save".

How to manage cookies on your Mac

To enable cookies on our website, follow the steps below.

Microsoft Internet Explorer 5.0 on OSX

  1. Click on "Explorer" at the top of your browser and select "Settings".
  2. Scroll down to the "Cookies" section in the "Received Files".
  3. Select "Do not ask."

Safari on OSX

  1. Click "Safari" on the top of your browser and select "Settings".
  2. Click the "Privacy" and then "Enable cookies."
  3. Select "only the pages you have visited."

Mozilla and Netscape on OSX

  1. Click "Mozilla" or "Netscape" at the top of your browser and select "Settings".
  2. Scroll down to the "Cookies" under "Privacy & Security".
  3. Select "Allow cookies only to the original site."

Opera

  1. Click "Menu" on the top of your browser and select "Settings".
  2. Then select "Options" tab and the "Advanced".
  3. Select "Enable cookies."