Privacy Policy

This privacy policy contains helpful information and guidelines about using Perthes.org and protecting your privacy.

We take your privacy very seriously. This policy describes how we use the information you provide when you use Perthes.org. By using Perthes.org, you consent to the collection and use of your information as described below.

Perthes.org is not intended to be used by children under age 13. If you are under age 13, please do not use Perthes.org or provide us with any information.

Perthes.org respects your privacy. We are committed to protecting your and your child’s information. Except as we describe below, we will not share it with other parties. We will not sell or lease your personal information.

How We Collect Your Information

  • When you create an account on Perthes.org, you will be asked to provide us with certain personal information. For example, we will need your name and email address. Accounts are optional. You can use nearly all of Perthes.org without having an account.
  • Some areas or features on Perthes.org may ask you for additional information about you or your child. This helps us gain information and understanding to help guide the Legg Calve Perthes Foundation’s (the foundation) efforts and support appropriate research directives. It is not mandatory to provide us with this information. However, some features of Perthes.org may not be available to you if you decide not to provide the information.
  • We may also collect your information if:
    • you sign up for newsletters;
    • you sign up for personalized information that we may deliver via emails;
    • you participate in any surveys we offer as part of our services on Perthes.org; or
    • you choose to provide information in any public area of Pertehs.org (for example, if you post a question in a public portion of Perthes.org, others will be able to see it).

Your participation in these features is optional and may be withdrawn at any time.

  • Even if you don’t have an account with us, we may also collect information related to your use of Perthes.org. This information does not include your name or contact information. It helps us to determine ways to improve Perthes.org. It also helps us give you information that will improve your experience.
  • Perthes.org also uses Google Analytics to help the foundation collect and process data. To see how Google uses this data, go to www.google.com/policies/privacy/partners/. (If you want to disable this function on your computer, you can change your browser setting to disallow cookies.)
  • Perthes.org will also use cookies to enhance your experience when using our site. We may use cookies in other ways to better focus the offerings of information and materials to you based on your usage during visits to our site.

How We Use Your Information

  • We generally use the information we collect to provide you with the information and services you request. We may also use your information to offer you free additional materials or services (either from us or from others) that may interest you. For example, we might let you know about events in your area.
  • We will never try to sell you anything. Perthes.org is a free resource for parents, patients, physicians, and the healthcare community. While the foundation prides itself on strong alliances with the medical and academic community, Perthes.org is not affiliated with any hospital, research center, or pharmaceutical company.

Information Disclosure

We will not disclose your or your child’s information to any third party except under the following circumstances:

  • We are required to do so by law;
  • We believe the disclosure is necessary to protect the rights, property, or safety of users, the public, or Perthes.org;
  • We need to disclose so a third party can help us provide our services (for example if we use a vendor to help us manage Perthes.org), but we make sure those parties have strict confidentiality practices;
  • You have agreed for us to share the information.

If you choose to use Perthes.org, you understand that:

  • All information you provide is voluntary. That includes:
    • information you give through surveys, forms, or other features; and
    • information you post in public areas of the site (comments on articles, questions asked to other parents, etc.).
  • If you post information in public areas, we cannot control how others may use it. For example, a third party might copy something you post and use it on another website not related to Perthes.org. Or a third party might use the information you posted to contact you. We urge you to use screen names, not real names.
  • You may update or delete your information by editing your profile and account settings on Perthes.org.
  • You can always request that we close your Perthes.org account. Provide us with that request in writing at PrivacyOfficer@perthes.org. Or write to us at PO Box 901 Haymarket VA 20169.
  • If you no longer want to receive emails or other communications from the foundation, use the “unsubscribe” link on our emails or manage your preferences on Perthes.org.
  • If you do not want us to use your or your child’s information as stated in this Privacy Policy, you should not give us the information. You can use parts of Perthes.org without providing any personal information.

PERTHES.ORG PRIVACY POLICY

Last updated: November 23, 2017

We take your privacy very seriously. This policy describes how we use the information that you provide when using our website, Perthes.org. By using Perthes.org, you agree to and consent to the collection and use of your information as described below.

If you do not want us to use your information or your data as stated in this Privacy Policy, please do not use Perthes.org.

Information We Collect

Non-identifying Information
We may collect some non-identifying information from you. This includes information that tracks the device you use to access Perthes.org (but this is not information that could be used to identify you or contact you).

Identifying Information
To access certain features of Perthes.org, you may be required to set up an account and provide us with certain information about yourself such as a first name (you can use your real name or make one up) and an email address. You may also have the option to provide your zip code so, for example, we can notify you of events in your region. You will also be required to create your own password to access your account. Accounts are optional. You can use nearly all of Perthes.org without having an account.

We may also, from time to time, request additional types of personal information. We might ask your child’s age, stage, gender, or what issues he or she is struggling with. It’s up to you whether you provide this information. We will not disclose any of this personal information unless you expressly authorize us to do so. We do not sell, lease, or share your or your child’s personal information with other parties.

If you have created an account, you may be able to voluntarily provide additional information in various areas of Perthes.org. For example, you may want to provide additional information as part of an optional parent profile to enhance your experience of Perthes.org and its features. In your profile, you may include information such as your child’s nickname (which must be created specifically for Perthes.org and should not identify your child to us or others), your child’s age, and the issue(s) your child is struggling with. We may use this information to personalize Perthes.org and its features just for you.

If you wish to access the Perthes.org community features, you will be required to create a screen name. We suggest you create a screen name that does not include your name or other identifying information. If you post information in public areas, we cannot control how others may use that information. For example, a third party might copy something you post and use it on another website. Or a third party might use the information you posted to contact you. We urge you to use screen names, not real names.

We may also collect your information if you sign up for newsletters or for customized information that we may deliver via emails, if you participate in any surveys we offer as part of our services on Perthes.org, or if you post information in a public area (for example you post a question in a public portion of Perthes.org).

Children
Perthes.org is designed for and intended for use by parents (or guardians) of children who have known or suspected Perthes disease as well as adults who had Perthes disease as a child. It is not designed for or intended for use by children.

We do not knowingly collect personal information from children under age 13. In fact, we do not offer Perthes.org to anyone under age 13. If you are under 13, please do not create an account, use Perthes.org, or provide Perthes.org with any personal information.

Cookie Policy and Disclosure
Notice: Please read this statement regarding Perthes.org’s use of cookies. It contains important information.

Perthes.org uses cookies in order to collect certain information and in order to assist you, the viewer, in having the easiest possible experience in navigating and accessing all of the features of Perthes.org. For example, we may use cookies to prevent you from having to enter your password each time you access Perthes.org.

Below you’ll find FAQs that describe our most common uses of cookies, which are an inherent part of our production process and enable us to better serve you.

  • What’s a cookie?
    A cookie is a small file that is sent to your computer by a site’s server. A cookie can be a record of your visit to a site, including information such as your screen name, registration information, time of last visit, pages viewed, etc. A cookie created by one site’s servers can be retrieved only by that site’s servers. Thus, information gathered in cookies through Perthes.org is not accessible to other sites.
  • What if I don’t accept cookies?
    If you set your browser to “not accept” any cookies, you will not be able to take full advantage of certain future features that Perthes.org may offer to enhance individual user experiences. We also do not suggest that you navigate our site with your browser’s “cookie alert” feature enabled. While you certainly could set your browser to alert you each time a cookie is passed to your machine, you most likely will find the experience of having to respond to frequent cookie alerts quite frustrating. We suggest that you turn the “cookie alert” feature off, or perhaps use the site for a short time with it on, once you’ve seen firsthand how we use the technology and become more familiarized and comfortable with it.
  • Why does Perthes.org use cookies?
    We use cookies to allow you to access and quickly navigate your way through our site. We may accomplish this in many ways, using several different cookies. When you first enter the site, for example, we may use a test cookie to confirm your browser’s ability to retain cookies.Next, we may check our database to verify your registration or other criteria so that you may gain access. A cookie is then temporarily “set” within your browser to allow you to proceed without having to confirm your identity with each subsequent page you request to view or otherwise access.In addition, we may use cookies to help us recommend content and information that we think will be of particular interest and use to you. We do that by using cookies to store small amounts of information about materials on our site that you select to review. As you move from item to item, the cookies track which items or issues you view more frequently. The site assumes these are of particular importance to you and recommends materials on related topics.

    If you do not want us to track your usage and interest, you can change the cookies setting on your browser. If you do so, your experience of the site may no longer be as personalized or customized.

  • So what’s in it for me?
    You’ll get faster, more convenient access. We won’t have to ask you to identify yourself with each new page requested. We can also deliver customized information to you and store your settings more efficiently. And you’ll get better information. We want to give you the features and materials you’re interested in.
  • Will the cookies you send me go away?
    Some of our cookies are long term. If they weren’t, we’d need to ask you for certain information, such as your screen name, with each new session. Other cookies do expire after a short period of time. A cookie, such as those required to retain settings you elect (screen name, password, personalization preferences, etc.) will continue to reside on your hard drive for subsequent use by your browser. Remember, cookies are small files and don’t take up significant disk-space on your computer.You are, of course, free to clear any and all cookies from your hard drive any time you wish. Simply search your system for any files named cookie*.* (or similar) and delete these at your discretion. Remember, however, that deleting these cookies means any long-term settings (such as your stored screen name and password) will need to be reset.To remove the cookies issued by Perthes.org—or any other cookies, for that matter—you may use certain software/shareware utilities (many of which are free).

    Once again, there are also a number of software and shareware programs available which are designed to periodically purge cookie files from your hard disk. PLEASE NOTE THAT WE ARE NOT RECOMMENDING ANY OF THESE APPLICATIONS AND WE CANNOT ADDRESS ANY RESULTING SUPPORT ISSUES THAT MAY BE RELATED TO THE USE OF THESE PROGRAMS.

    Perthes.org also uses Google Analytics to help Perthes.org collect and process data. To see how Google uses this data, go to www.google.com/policies/privacy/partners/.

How We Use and Secure Your Information

Uses and Disclosures
When you provide information, we typically use it to customize your experience and to provide you access to Perthes.org and services. We can offer free additional materials or services that may be of particular interest to you. And we can improve the design and performance of Perthes.org.

We may use the information you provide to send you notices that contain information about events, content, materials and services provided by the foundation and other third-party organizations. When we do this, we do not disclose your information to these third-party organizations. Unless you consent, we will not use the information provided by you in a way that is incompatible with the purposes for which it was originally collected or subsequently authorized by you. We will never try to sell you anything.

Perthes.org is a free resource for parents created in collaboration with nonprofit organizations dedicated to the research and understanding of rare diseases. One of the nonprofit organizations helping provide Perthes.org and you with technical information and resources relevant to the treatment and prognosis of Perthes Disease is the International Perthes Study Group. Perthes.org is not affiliated with any hospital or pharmaceutical company.

We may disclose your information if we need to so a third-party vendor can help us provide our services (for example if we use a vendor to help us manage Perthes.org). We may also use other vendors. We make sure those vendors have strict confidentiality practices. We may also disclose your information if, among other things, we are required to do so by law or if acting with a good faith belief that such disclosure is reasonably necessary to: (1) comply with legal process, including, but not limited to lawful subpoenas; (2) enforce the Terms of Use of Perthes.org; (3) respond to legal claims; (4) respond to your requests for customer services or transaction completion; or (5) protect the rights, property, or personal safety of the foundation, its users, or the public.

Security and Storage
Our security measures are designed to protect your information from loss, unauthorized access, disclosure, alteration, or destruction. Perthes.org has physical, electronic, and managerial procedures, such as Secure Sockets Layer (SSL) software, which encrypts information you input. This protects your information and helps prevent unauthorized access. Although we take these measures to protect against unauthorized disclosure of your information, we cannot guarantee you that your information will never be disclosed in a manner that is inconsistent with this Privacy Policy.

Opting Out of Communications From Perthes
By providing your email address while signing up for Perthes.org, you automatically grant permission to Perthes.org to send communications to you, unless you opt out at that time. You may also manage your preferences and opt out of receiving email communications by clicking “unsubscribe” from an email sent to you by Perthes.org or by signing into Perthes.org online and managing your preferences.

Your Opt-In Consent

Opting to Disclose Your Information to Others
If you choose to participate in other features of Perthes.org that allow you to interact directly with medical, health, education, and legal consultants or other Perthes.org users, you may choose to provide certain identifiable or even sensitive information to those consultants or other users. Unless you consent, we will not use the information provided by you in a way that is incompatible with the purposes for which it was originally collected or subsequently authorized by you.

Opting to Disclose Your Information in Public Areas
If you disclose your information in public areas of Perthes.org, it may be viewed by any other users of Perthes.org, who may collect your information, or disclose it in other contexts, or make use of it in ways that we cannot control or predict. The information you post may also show up in third-party search engines. Any information you post in public areas of Perthes.org is not covered by this Privacy Policy and you may be contacted by third parties who obtain your information in one of our public areas.

If you mistakenly post information in a public area of Perthes.org and would like to remove it, you can send an email to PrivacyOfficer@Perthes.Org. We will try to remove it, although in some cases we may not be able to.

Please keep in mind that any information you disclose in public areas of Perthes.org may become widespread. You should exercise caution when deciding the type and amount of information you want to disclose.

Charitable Contributions
We may use a vendor, such as payment processor, to help assist us in delivering Perthes.org to you for purposes of making donations. In some cases you may be required to submit personal information (such as your name and address) and financial information (such as a credit card number) to these vendors. We will use a vendor that meets the necessary security requirements for these purposes. We will keep your personal information (e.g., name, email address, phone number, address) and financial information (e.g., payment card details) provided in connection with your donation private and will not rent, share or sell your information without your consent, other than for purposes of processing your donation and as otherwise provided in this Privacy Policy.

Accessing Third-Party Sites from Perthes.org
Perthes.org may provide links to websites of other organizations or companies that may offer materials and services as well as links to other sites.

In using Perthes.org or the linked sites of other organizations or companies, you may have the option to sign up for email lists operated by these organizations or companies. If you choose to request that your address be removed from the organizations’ or companies’ lists, we cannot control whether or not they will immediately stop using your address. To stop receiving communications from these organizations or companies, you should contact them directly.

Unrelated Accounts
When you directly submit information to third parties, their privacy policies, not ours, will govern their use of the information and data. You should review their privacy policies and terms of service. We do not make any representations regarding the policies or practices of these third parties.

Application of This Privacy Policy
This Privacy Policy applies only to the privacy of users of Perthes.org. If you follow links and move from Perthes.org to external websites owned or operated by other entities or individuals, you should read the privacy policies of those external websites carefully. If you access Perthes.org through another website where you have an account (for example, Facebook), that website’s privacy policies and your personal settings on that account may control how your information is used. The terms by which the owners or operators of those websites manage your information could differ from how Perthes.org manages your information. The foundation is not responsible for the practices of these third parties.

Communications

Correcting/Updating Personally Identifiable Information
Perthes.org provides you with the ability to review, correct, and delete any of the information that you have provided to us. If you have questions about this Privacy Policy or wish to review or correct any information you have provided to us, you may do so by editing your profile and account settings on Perthes.org. Or you may contact our Privacy Officer at PrivacyOfficer@Perthes.org,  or write to us at PO Box 901 Haymarket VA 20169. To protect your privacy and security, we will take reasonable steps to verify your identity before granting access or making changes or modifications. Unfortunately, we cannot always ensure that such changes or modifications will be reflected in all versions of your information as previously stored.

Reporting Complaints
Legg Calve Perthes Foundation is committed to protecting your privacy and to protecting your information. If you have any complaints regarding these issues or how we process that information, or any other security-related issues regarding Perthes.org, we urge you to contact us. Email us at PrivacyOfficer@Perthes.org, or write to us at PO Box 901 Haymarket VA 20169.

Privacy Policy Updates
As Perthes.org grows and changes, we expect to revise or enhance this Privacy Policy through amendments from time to time. We will post a current version of our Privacy Policy on Perthes.org and will try to communicate with you about material changes to our Privacy Policy. If any modification is unacceptable to you, you should cease using Perthes.org. If you do not immediately cease using Perthes.org, you will be conclusively deemed to have accepted the changes. However, we will obtain your opt-in consent before we implement any changes on how we will share your information.

Legal

Assignment
Your information will remain subject to the terms of this Privacy Policy even if the foundation undergoes an organizational transition. However, we may transfer your information to a successor entity upon a merger, consolidation, or other reorganization in which the foundation participates or to a successor not-for-profit assignee or licensee of all or substantially all of the foundation’s assets to which Perthes.org relates. You hereby consent to such transfers and the foundation may assign and transfer all of the rights, benefits, duties, and obligations of this Privacy Policy, under the circumstances described in this paragraph.

Governing Law
This Privacy Policy is governed by and incorporated by reference into the Terms of Service, available at Perthes.org, and should be interpreted in a manner consistent with that terms of use. Where an inconsistency exists between this Privacy Policy and the Terms of Use, this Privacy Policy shall control the relationship between the parties. If you believe we have violated this Privacy Policy, please contact our Privacy Officer at PrivacyOfficer@Perthes.org, PO Box 901 Haymarket VA 20169. If we do not satisfy your concerns regarding any alleged violation and you wish to pursue a claim against us, you agree to engage in mediation in the event that direct negotiations fail to resolve your concerns. The period for mediation shall be thirty (30) days unless the parties mutually agree to an extension. If mediation fails, the parties will arbitrate the dispute pursuant to the applicable rules of the Judicial Arbitration and Mediation Services (“JAMS”). Any arbitration shall take place in Washington, DC, before an arbitrator chosen from JAMS. Any award shall be final, binding, and conclusive upon the parties, and a judgment rendered thereon may be entered in any court having jurisdiction thereof. The arbitrator may award any form of remedy or relief (including injunctive relief, such as temporary restraining orders, preliminary and permanent injunctions) that would otherwise be available in court. Any award pursuant to said arbitration shall be accompanied by a written opinion of the arbitrator setting forth the reason for the award. To the extent not inconsistent with applicable laws, the arbitrator will have the authority to hear and grant motions and applications, including on an ex parte or expedited basis. The award rendered by the arbitrator shall be conclusive and binding upon the parties hereto, and judgment upon the award may be entered, and enforcement may be sought in, any court of competent jurisdiction. The prevailing party in any dispute relating to this Agreement shall be entitled to recover associated costs, including reasonable attorneys’ fees.

To the fullest extent permitted by applicable law, no arbitration under this Privacy Policy shall be joined to an arbitration involving any other party, whether through class arbitration proceedings or otherwise.

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