Effective Date: December 28, 2021
Last Updated: November 23, 2021
At Health Union we take your privacy seriously.
How We Collect Information
Information You Provide to Us. We collect identity, contact, and health-related information that you provide directly to us. Identity and contact information may include your name, age, date of birth, e-mail address, phone number, mailing address, gender, profile picture, social media handles, account username, and information you provide via Facebook or Google account, if applicable. Health-related information may include your medical conditions and diagnoses. You provide this type of information to us when you create and register an account, fill out your User profile, participate within the Site, respond to a survey or provide feedback, contact us regarding the Site, or post comments or information on the Site. Please do not provide us with sensitive information, such as government identifiers or financial information, unless specifically requested.
- Public Forums and Comments - Some of our Sites feature community areas, stories, articles, and forums where users can post comments, share information, provide support, or ask questions. These areas are open to the public and are not private. Be aware that any Personal Information that you choose to submit there can be read, collected, or used by others, or could be used to send unsolicited messages to you.
- User Profiles and Status Updates If you choose to register for an account on SpinalMuscularAtrophy.net, you will be asked to create a Username which will be publicly viewable. User profiles are public by default, which allows others to see your information. However, you can make your profile private by adjusting your profile settings. Please be aware that any information, including personal information, you share in our forums or anywhere on our Site is made publicly available. You should think carefully before posting any information on any public forum.
Information Generated from Use of the Site. We also collect certain information when you access, browse and use our Site. We collect this information because it helps us operate and provide our Site to you. Information generated from Use of the Site includes information that we automatically receive and record from your browser or mobile platform. This information includes standard information about visits and system capabilities, such as:
- Device information - information about the device(s) you use to access our Site, including MAC address, IP address, browser type and version, your location, time zone setting, browser plug-in types and versions, operating system and platform, device type, device and application identifiers, operating information, mobile carrier, and cookies;
- Activity information - information about your visits to the Site, including the full URL clickstream to, through, and from the Site, including dates and times; pages you view, searches you run, length of time browsing search results, specific search results you select to view, length of visits to other pages, page interaction information (such as scrolling, clicks, and mouse-overs), your engagement with certain variable/dynamic elements of a page and methods used to browse away from the page; and
- Technical information – information about technical performance of the Site during your visit, including page response times and download errors; and information we need and use to facilitate your use of our Site (including to provide access to third party websites and services), such as URL requests, destination IP addresses, or device configuration details.
Some of the information we collect is generated using cookies and beacons. For more details about cookies, beacons, and your choices, see Cookies and Beacons below.
Information from Other Sources. To serve you better, we may combine information you provide to us on the Site or information about your use of the Site with information from third parties. This may include demographic or public information. Third parties may include service providers, such as Salesforce.com, Inc., Facebook, Inc., and Google Inc., advertising service partners, and ad networks that help us understand our Users and provide better service to our Users.
Job Applicants / Employees/Independent Contractors. As part of the application process, we may collect your contact information as well as certain other information about you. This may include race, ethnicity, previous employment and education history, references, information relating to disabilities, physical or mental health information, sexual orientation, veteran status, trade union membership, immigration or naturalization records, information relating to your criminal record and background check, interview notes, test scores, and any correspondence between us.
If you accept a position with us, we may collect some of the information listed above as well as other information necessary to manage your employment relationship, including your government identification number or tax file number and bank account information.
To see all the categories of Personal Information we collect from you, click here.
How Information May Be Used
Personal Information. Personal Information is information that we can use to identify or contact you, such as your username, password, and e-mail address (collectively, “Personal Information”).
We may use Personal Information collected on the Site for the following purposes:
- to create and manage your account;
- to provide the Site to you;
- to evaluate the quality of the information available on the Site, provide more relevant content, analyze Site usage, and improve the Site;
- for the specific purpose for which it was volunteered (for example, to respond to your inquiries or fulfill a request you made using the Site);
- to deliver communications or obtain feedback relevant to your use of the Site;
- to develop, market, sell or provide products and services, including advertisements on this Site and other websites;
- operate, evaluate and improve our business, including conducting surveys and market research, developing new products, services, and promotions (such as, for example, special events, programs, offers, contests), analyzing and enhancing existing products, services, and promotions, managing our communications; performing accounting, auditing, and other internal functions;
- for detecting and protecting against error, fraud or other criminal activity; and
- as permitted by, and to comply with, any legal or regulatory requirements, process or provisions.
In addition, we may use your information as described in any notice provided at the time you provide the information; and for any other purpose for which you may provide consent.
Health Union encourages you to omit any sensitive or other information from Your Content that you wish to keep confidential. Health Union does not intend for Users to include Personal Information in User Content. Your Content will be posted in public areas of the Site and treated by Health Union as non-confidential, regardless of whether it contains Personal Information. Health Union does not review or approve any User Content before posting.
Non-Personal Information. We may also gather some non-personal information about you during your use or visit to the Site. Non-personal information is information that cannot be used to identify or contact you (collectively, “Non-Personal Information”). Health Union also may use your Non-Personal Information to present you with targeted content and advertisements (including on third party websites and applications). Such targeted content and advertisements may include marketing for the Site, or the sites, products or services of our business and advertising partners. Your Non-Personal Information also may be used to optimize and determine the effectiveness of content and advertisements, analyze interactions with content and advertisements.
We may also combine information about your use of our Site with information that we obtain from other Users to use in an aggregate or anonymous manner for similar purposes. Information collected on the Site will be gathered by us directly or through third party service providers working on our behalf.
Job Applicants / Employees/Independent Contractor. If you are a job applicant, we may use your Personal Information as necessary to determine your fitness for a position, to make any relevant adjustments during the recruitment process, and for equal opportunities monitoring. If you are an employee, we may use your Personal Information as necessary to perform the employment contract with you.
Links to Third Party Sites
Some services, content and advertisements which appear on the Site are hosted on or link to Third Party Sites. Health Union does not control or endorse any Third Party Sites. If you provide Personal Information to the Third Party Sites, remember that the privacy policies of those third parties apply. We are not responsible or liable for any content presented by or contained on any Third Party Sites, including, but not limited to, any advertising claims or marketing practices. We also are not responsible or liable for any privacy or security policies of any Third Party Site.
In addition, if you participate in the interactive features on the Site (by posting comments, posting images, sending messages, or sharing a story) or if you share information with social media sites (such as Facebook® or Twitter®), you should be aware that any information you submit there can be read, collected or used by other Users and could be used to send you unsolicited messages. We are not responsible for the information you choose to disclose and make public in these forums.
Please be aware that if you click on or otherwise interact with an advertisement on our Site, the advertiser may assume that you meet its target criteria, even though we have not shared your Personal Information.
How We May Share the Information We Gather
Personal Information. Health Union shares Personal Information with sponsors and our vendors, service providers, suppliers, and business partners in limited circumstances, including:
- You have expressly consented to our sharing of the information (for example, if you indicated you’d be interested in receiving information about a clinical trial, we may share your e-mail address with the trial sponsor);
- We have a good faith belief that access, use, preservation or disclosure of such information is reasonably necessary to satisfy any applicable law, regulation, legal process or governmental request, or to protect against imminent harm to the rights, property or safety of Health Union, its Users or the public as required or permitted by law.
- Please be aware that, in certain circumstances, once we share Personal Information with another company, the information received by the other company is controlled by that company and becomes subject to the other company’s privacy practices.
- We may also transfer or assign Personal Information to third parties as a result of, or in connection with, a sale, merger, consolidation, change in control, transfer of assets, bankruptcy, reorganization, or liquidation.
To see all the categories of Personal Information we share, click here.
Non-Personal Information. In addition, we may share or make available Non-Personal Information, including aggregated or anonymized data:
- with analytics, search engine, or other service providers that help us improve our Site;
- to report to our affiliates, licensors and service providers, advertising partners and ad networks about the use of various aspects of the Site;
- with other Users or prospective Users of the Site; and
- to advertisers and advertising networks to select and serve relevant advertisements.
Job Applicants / Employees/Independent Contractor/Co-op Interns. If you are a job applicant, we may share Personal Information with employment/recruitment agencies or background screening providers as part of the recruitment process. If you are an employee, we may share Personal Information with third parties where required by law. We may also share Personal information with our employees, contractors, designated agents, or third-party service providers when required to help us administer the employment relationship with you. This can include third-party service providers who provide services to us or on our behalf. Third-party service providers may include, but are not limited to, payroll processors, benefits administration providers, and data storage or hosting providers.
Cookies and Beacons
Please note that the following information in this "Cookies and Beacons" Section does not apply to Users located in the European Union (EU). Health Union does not collect or retain any cookies or beacons on Users known to be located in the EU.
- Browser Cookies. A browser cookie is a small file placed on the hard drive of your computer. That cookie then communicates with servers, ours or those of other companies that we authorize to collect data for us, and allows recognition of your personal device. We associate cookies with Personal Information in order to allow you to use the automatic recognition capabilities on restricted areas of the Site or ask us to contact you with additional marketing information. We do not otherwise collect Personal Information from browser cookies and we do not associate browser cookies with your Personal Information.
You may use the tools available on your computer or other device to set your browser to refuse or disable all or some browser cookies, or to alert you when cookies are being set. However, if you refuse or disable all browser cookies, you may be unable to access certain parts or use certain features or functionality of our Site.
To learn more about cookies, you can visit http://www.allaboutcookies.org.
- Beacons. Our Site and e-mails may contain small electronic files known as beacons (also referred to as web beacons, clear GIFs, pixel tags and single-pixel GIFs) that permit us to, for example, count Users who have visited those pages or opened an e-mail and for other website-related statistics. Beacons in e-mail marketing campaigns allow us to track your responses and your interests in our content, offerings and web pages. You may use the tools in your device to disable these technologies as well.
Social Media Integration. Our Site may, from time to time, contain links to and from social media platforms. If you choose to connect to us through a social media platform, such as Facebook or Twitter, we may collect additional information from you, such as your screen names, profile picture, contact information, contact list, and the profile pictures of your contacts, through the social media platform. Please be advised that social media platforms may also collect information from you. When you click on a social plug-in, such as Facebook’s “Like” button or Twitter’s “Tweet” button, that particular social network’s plugin will be activated, and your browser will directly connect to that provider’s servers. We do not have control over the collection, use and sharing practices of social media platforms and encourage you to review their usage and disclosure policies and practices, including the data security practices, before using the social media platforms.
Your Cookies Preferences. Health Union aims to create an optimal site experience and may use the data provided through cookies or web beacons to display advertisements or content that match your preferences on this Site or other websites. You always have the option to set your browser cookies setting as you wish. At any time you can delete all cookies on your computer. However, to experience all the Site tools and functionalities, your browser will need to accept cookies.
How We Respond to “Do Not Track” Signals. Our Site does not respond to or alter its practices detailed herein based upon your selection of the “Do Not Track” setting or other “opt out” setting or feature that may be offered by your browser; however, we reserve the right to do so in the future.
Email Communications. If you subscribe to receive electronic newsletters or promotional emails from SpinalMuscularAtrophy.net/Health Union, including new ideas, market research, survey and clinical trial opportunities, special offers and event information, or to otherwise receive communications about our or our partners’ products and services, you have the right at any time to opt out of receiving emails from us by emailing contact@SpinalMuscularAtrophy.net or clicking the unsubscribe link provided at the bottom of all communications we send. There is no charge to you to unsubscribe.
Digital Advertising Alliance. Health Union and some of our third party advertisers and display networks participate in the Digital Advertising Alliance’s Self-Regulatory Program for Online Behavioral Advertising and Self-Regulatory Program for Multi-Site Data and allow consumers to opt-out of targeted advertising based on web activity tracking. For more information regarding the foregoing, please visit http://www.aboutads.info/choices/. Please note that even if our third party advertisers or display networks participate in the Digital Advertising Alliance’s Self-Regulatory Program for Online Behavioral Advertising or Self-Regulatory Program for Multi-Site Data, and you opt out of targeted advertising based on web activity tracking, you still may receive standard advertisements from us and targeted advertisements from third parties. You may need to re-click the link and follow the instructions provided therein if you delete cookies or other similar technology or use a different computer, device or browser.
Updating Information. The accuracy of the information we have about you is very important. Users may update their information at any time by logging in to their SpinalMuscularAtrophy.net user account and updating their profile questions. Otherwise, to review or correct your Personal Information, please contact us at firstname.lastname@example.org. You may also use an authorized agent to submit a request to update your information on your behalf if you provide the authorized agent signed written permission to do so. Authorized agents may submit requests using the instructions described above.
Accessing Information. You have the right to request that we disclose personal information that we collect, use, and share about you. You also have the right to not receive discriminatory treatment for exercising your access right. To request access to your Personal Information, please fill out this form, contact us at email@example.com, or click here to download our request form that you may mail or fax us. You may also use an authorized agent to submit a request to access your information on your behalf if you provide the authorized agent signed written permission to do so. Authorized agents may submit requests using the instructions described above.
Deleting Information. You have the right to request that we delete your Personal Information, subject to some exceptions. Once we've received and confirmed your request, we will delete (and direct our service providers to delete) your Personal Information unless an exception applies. To request that we delete your Personal Information, please fill out this form, contact us at firstname.lastname@example.org or click here to download our request form that you may mail or fax us. You may also use an authorized agent to submit a request to access your information on your behalf if you provide the authorized agent signed written permission to do so. Authorized agents may submit requests using the instructions described above.
Sale Opt-out. To submit a request to opt-out of the sale of your Personal Information, please fill out this form or send an email to email@example.com with the subject line “do not sell info.” You have the right not to receive discriminatory treatment for exercising your opt-out right. You may also use an authorized agent to submit a request to opt-out on your behalf if you provide the authorized agent signed written permission to do so. Authorized agents may submit requests using the instructions described above.
Health Union uses reasonable administrative, physical and electronic security measures to protect against the loss, misuse and alteration of Personal Information. No transmission of data over the internet is guaranteed to be completely secure. It may be possible for third parties not under the control of Health Union to intercept or access transmissions or private communications unlawfully. While we strive to protect Personal Information, neither Health Union nor our service providers can ensure or warrant the security of any information you transmit to us over the internet, in particular our open forums and discussion areas. Any such transmission is at your own risk.
Protection of Children
Your California Privacy Rights
We do not share Personal Information with third parties for their own direct marketing purposes without your consent. California residents under 18 years old, in certain circumstances, may request and obtain removal of Personal Information about you and posted on our Site. Please be mindful that this would not ensure complete removal of the content posted on our Site by you. To make any request pursuant to California privacy law, please contact us at firstname.lastname@example.org.
This section only applies if you are a resident of a member state of the European Union (EU), the United Kingdom, or the European Economic Area (EEA).
If you have questions or concerns regarding the use of your Personal Information, please contact us at the address below.
The Personal Information we collect from you may be transferred to and stored by our group companies, or IT vendors and other service providers (as specified in How We May Share the Information We Gather above) who operate on our behalf. We also transfer information to a number of providers of business applications – such as CRM and marketing applications – as well marketing service providers. These providers are primarily located in the United States but may also be located in other jurisdictions.
In certain cases, there may not be an adequacy decision by the European Commission and/or United Kingdom authorities in respect of those countries. Adequacy of data protection is instead ensured by Standard Contractual Clauses approved by the European Commission in accordance with Article 46(2)(c) of the General Data Protection Regulation, or any equivalent clauses approved by the authorities in the United Kingdom including any additional safeguards as required by EU / UK data protection laws that we have in place with that third party. A copy may be requested by contacting our Data Protection Officer at the contact address below.
We retain your Personal Information for as long as necessary for the purpose(s) for which it was initially collected. The criteria we use to determine the retention period is as follows:
- whether there are contractual or legal obligations that exist which require us to retain the information for a period of time;
- whether there is an ongoing legal claim that relates to any business (or otherwise) relationship you have with us, or that is otherwise related to your relationship with us; and
- whether any applicable law, statute, or regulation allows for a specific retention period.
Your Privacy Rights
You may have – in accordance with applicable data protection laws – the following rights when it comes to our handling of your Personal Information. Please note that many of these rights are not absolute, and we may have grounds for refusing to comply with your request to exercise them (for example, where we are (a) required or permitted by law to process your personal data in a way that is incompatible with your request, or (b) able to rely on exemptions under data protection law which entitle us to process your personal data in a way that is incompatible with your request). Where such circumstances apply, we will inform you of this at the time you make a request to exercise your rights.
- Right of access – you may have the right to request a copy of the Personal Information we have about you and to request supporting information explaining how the Personal Information is used;
- Right of rectification – you may have the right to request that we rectify inaccurate Personal Information about you;
- Right of erasure – you may have the right to request that we erase Personal Information about you;
- Right to restrict processing – in some situations, you may have the right to request that we do not use the Personal Information you have provided (for example, if you believe it to be inaccurate);
- Right to data portability – you may have the right to receive your Personal Information in a structured, commonly used and machine-readable format and to transmit such information to another controller;
- Right to withdraw consent – where we process your Personal Information based on consent (including direct marketing consents), you have the right to withdraw consent at any time. However, this will not affect the lawfulness of the processing based on consent before its withdrawal. Furthermore, even in case of a withdrawal we may continue to use your personal information as permitted or required by law; and
- Right to object – where we are processing your Personal Information based on a legitimate interest (or those of a third party) you may challenge this. However, we may be entitled to continue processing your Personal Information where we can demonstrate that we have compelling legitimate grounds to process your information (which override your rights and freedoms), or where continuing to process your Personal Information is relevant to the establishment, exercise or defence of legal claims. You also have the right to object where we are processing your Personal Information for direct marketing purposes. If you would like to exercise any of these rights or in case you should have any concerns about how we process your Personal Information, please contact us using the information below.
You will not have to pay a fee to access your personal data (or to exercise any of the other rights). However, we may charge a reasonable fee if your request is clearly unfounded, repetitive or excessive. Alternatively, we could refuse to comply with your request in these circumstances.
We may need to request specific information from you to help us confirm your identity and ensure your right to access your Personal Information, or access someone else's personal information on their behalf (or to exercise any of the other rights). This is a security measure to ensure that personal information is not disclosed to any person who does not have the right to receive it.. We may also contact you to ask you for further information in relation to your request to speed up our response.
We try to respond to all legitimate requests within one month. If your request is complex or you have made a number of requests, it may take us longer than a month to complete. In this case, we will notify you and keep you updated. Should we be unable to comply with your request, we will provide an explanation.
Data Protection Officer Contact Information
You may contact our Data Protection Officer using the contact information below with any issues or questions you have regarding our processing of personal information.
You have the right to make a complaint at any time to the Information Commissioner's Office (ICO), the UK supervisory authority for data protection issues (Tel: 0303 123 1113 or at www.ico.org.uk). Alternatively, you can also make a complaint to the supervisory authority in the Member State of the EU or EEA in which you are resident. We would however appreciate the chance to deal with your concerns before you approach the ICO or a supervisory authority, so please contact us in the first instance.
Health Union, LLC
Attn: Privacy Officer
1218 Sansom Street
Philadelphia, PA 19107
CALIFORNIA PRIVACY LAW APPENDIX
To learn more about the categories of personal information we collect, how we collect it, why it is collected, and with whom we share the information, please see the chart below.
|Category||What we collect||How we collect it||Why we collect it||With whom we share it|
|Identifiers||Name, postal address, online identifier, Internet Protocol address, email address, or other similar identifiers.||Collected online or offline when you directly provide it to us, through your use of our services, or from third parties.||We collect this information for the purposes listed in the How Information May Be Used section above.||Shared with our affiliates, partners, sponsors, vendors, and service providers as described in the How We May Share the Information We Gather section above.|
|Personal information categories listed in the California Customer Records statute (Cal. Civ. Code § 1798.80(e))||Name, address and telephone number. (Some personal information included in this category may overlap with other categories.)||Collected online or offline when you directly provide it to us.||We collect this information for the purposes listed in the How Information May Be Used section above.||Shared with our affiliates, vendors, and service providers as described in the How We May Share the Information We Gather section above.|
|Protected classification characteristics under California or federal law||Age, sex, and sexual orientation.||Collected online or offline when you directly provide it to us.||We collect this information for the purposes listed in the How Information May Be Used section above||Shared with our affiliates, vendors, and service providers as described in the How We May Share the Information We Gather section above.|
|Commercial information||Services purchased, obtained, or considered.||Collected online or offline when you directly provide it to us, through your use of our services, or from third parties.||We collect this information for the purposes listed in the How Information May Be Used section above||Shared with our affiliates, vendors, and service providers as described in the How We May Share the Information We Gather section above.|
|Biometric information||Not collected||N/A||N/A||N/A|
|Internet or other similar network activity||Information on a customer's interaction with our website or an advertisement on our website.||Collected online when you directly provide it to us, through your use of our services, or from third parties.||We collect this information for the purposes listed in the How Information May Be Used section above||Shared with our affiliates, partners, sponsors, vendors, and service providers as described in the How We May Share the Information We Gather section above.|
|Geolocation data||Physical location via IP addresses||Collected online when you directly provide it to us, through your use of our services, or from third parties.||We collect this information for the purposes listed in the How Information May Be Used section above.|
|Sensory data||Not collected||N/A||N/A||N/A|
|Professional or employment-related information||If you apply for a job with us, we may collect information related to your employment history.||Collected online or offline when you directly provide it to us or from third parties.|
|Non-public education information||If you apply for a job with us, we may collect information related to your educational background.||Collected online or offline when you directly provide it to us or from third parties.|
|Inferences drawn from other personal information||Profile reflecting a person's preferences and characteristics.||Collected online when you directly provide it to us, through your use of our services, or from third parties.|
As the term is defined by the CCPA, we “sold” the following categories of Personal Information in the last 12 months: identifiers/contact information, Internet or other electronic network activity information, and inferences drawn from the above. We “sold” each category to advertising networks and data analytics providers.
The business or commercial purposes of “selling” Personal Information is for third-party companies to perform services on our behalf, such as marketing, advertising, and audience measurement.
We do not “sell” Personal Information of known minors under 16 years of age.