Privacy Policy and Cookie Policy

Background:

CIDP Neuropathy Support Group of California understands that your privacy is important to you and that you care about how your information is used and shared online. We respect and value the privacy of everyone who visits Our Site and will only collect and use information in ways that are useful to you and in a manner consistent with your rights and Our obligations under the law.

This Policy applies to our use of any and all data collected by us in relation to your use of Our Site. Please read this Privacy Policy carefully and ensure that you understand it. Your acceptance of Our Privacy Policy is deemed to occur upon your first use of Our Site and You will be required to read and accept this Privacy Policy when signing up for an Account. If you do not accept and agree with this Privacy Policy, you must stop using Our Site immediately.

  1. Definitions and Interpretation

In this Policy the following terms shall have the following meanings:

“Account” means an account required to access and/or use certain areas and features of Our Site;
“Cookie” means a small text file placed on your computer or device by Our Site when you visit certain parts of Our Site and/or when you use certain features of Our Site. Details of the Cookies used by Our Site are set out in section 12, below;
“Our Site” means this website, cidpneuropathy@gmail.com
“We/Us/Our” Means CIDP Neuropathy Support Group of California which is based in Fresno, California
  1. Information About Us
  1. Scope – What Does This Policy Cover?

This Privacy Policy applies only to your use of Our Site. It does not extend to any websites that are linked to from Our Site (whether We provide those links or whether they are shared by other users). We have no control over how your data is collected, stored or used by other websites and We advise you to check the privacy policies of any such websites before providing any data to them.

  1. What Data Do We Collect?

Some data will be collected automatically by Our Site (for further details, please see section 12 on Our use of Cookies and Our Cookie Policy), other data will only be collected if you voluntarily submit it and consent to Us using it for the purposes set out in section 5, for example, when signing up for an Account. Depending upon your use of Our Site, We may collect some or all of the following data:

signing up for an Account. Depending upon your use of Our Site, We may collect some or all of the following data:

From users, we collect the following data
what personal data do we ask for?
  • Name, Email and Contact Information
  • Location
  • Type of inquiry
  • CIDP Quick Test results
why do we want your personal data? To provide non-medical advice
what do we do with your personal data? We provide non-medical advice to CIDP/GBS/Neuropathy advice
can you withdraw your permission? Yes. At any time by telling us at
  • IP address (automatically collected)
  • web browser type and version (automatically collected)
  • operating system (automatically collected)
  • a list of URLs starting with a referring site, your activity on Our Site, and the site you exit to (automatically collected)
  1. How Do We Use Your Data?
  • All personal data is stored securely in accordance with the EU General Data Protection Regulation (Regulation (EU) 2016/679)(GDPR) and United States Data Projection Regulation.
  • We use your data to provide the best possible products and services to you. This includes:
  • Providing and managing your Account
  • Providing and managing your access to Our Site
  • Personalizing and tailoring your experience on Our Site
  • Supplying Our products and services to you
  • Personalizing and tailoring Our products and services for you
  • Responding to communications from you
  • Supplying you with email of newsletters, alerts etc. that you have subscribed to (you may unsubscribe or opt-out at any time via online web-forms
  • Market research
  • Analyzing your use of Our Site [and gathering feedback] to enable Us to continually improve Our Site and your user experience
  • In some cases, the collection of data may be a statutory or contractual requirement, and We will be limited in the products and services We can provide you without your consent for Us to be able to use such data.

With your permission or where permitted by law, We may also use your data for marketing purposes which may include contacting you via email and phone and text message and post with information, news and offers on Our products and services. We will not, however, send you any unsolicited marketing or spam and will take all reasonable steps to ensure that We fully protect your rights and comply with Our obligations under the GDPR and the Privacy and Electronic Communications (EC Directive) Regulations 2003, as amended in 2004, 2011 and 2015, and the California Civil Code §1798.82, The California Security Breach Notification Law, and The California Online Privacy Protection Act.

The California Security Breach Notification Law requires any person or business that conducts business in California and owns or licenses computerized data that includes personal information to disclose any security breach of this information following discovery or notification of the breach to any resident of California whose unencrypted personal information was, or is reasonably believed to have been, acquired by an unauthorized person. In addition, any person or business that maintains computerized data that includes personal information that the person or business does not own must notify the owner or licensee of the information of any breach of the security of the data immediately following discovery, if the personal information was, or is reasonably believed to have been, acquired by an unauthorized person. If the person or business providing the notification was the source of the breach, an offer to provide appropriate identity theft prevention and mitigation services, if any, must be provided at no cost to the affected person for not less than 12 months

The California Online Privacy Protection Act requires a commercial website to conspicuously post its privacy policy on its website, which describes its information handling procedures. As amended, the Act requires operators of web sites, online services and mobile apps that are directed to minors or that have actual knowledge that a minor is using their site or service to both:

  • Permit a minor to remove or request the removal of certain online information.
  • Disclose how minors can remove or request removal of content.

The Act also prohibits such operators from advertising and marketing products not legally available to minors (including alcohol, firearms, tobacco, tattoos and lottery tickets).

  • Advertisers whose content appears on Our Site may engage in what is known as “behavioral advertising” – advertising which is tailored to your preferences, based on your activity. Your activity is monitored using Cookies. You can control and limit your data used in this way by adjusting your web browser’s privacy settings. Please note that We do not control the activities of such advertisers, nor the information they collect and use. Limiting the use of your data in this way will not remove the advertising, but it will make it less relevant to your interests and activities on Our Site.
  • Under GDPR we will ensure that your personal data is processed lawfully, fairly, and transparently, without adversely affecting your rights.  We will only process your personal data if at least one of the following basis applies:
  • you have given consent to the processing of your personal data for one or more specific purposes;
  • processing is necessary for the performance of a contract to which you are a party or in order to take steps at the request of you prior to entering into a contract;
  • processing is necessary for compliance with a legal obligation to which we are subject;
  • processing is necessary to protect the vital interests of you or of another natural person;
  • processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; and/or
  • processing is necessary for the purposes of the legitimate interests pursued by us or by a third party, except where such interests are overridden by the fundamental rights and freedoms of the data subject which require protection of personal data, in particular where the data subject is a child.
  1. How and Where Do We Store Your Data?
  • We shall not keep any personal data longer than necessary, but acknowledge that this will be dependent on the different types of documents and data that we have responsibility for in order to use it and/or for as long as We have your permission to keep it. As such, our general data retention as long as the user specifically requests to delete it.  In any event, We will conduct an annual review to ascertain whether we need to keep your data. Your data will be deleted if we no longer need it.
  • Some or all of your data may be stored or transferred outside of the European Economic Area (“the EEA”) (The EEA consists of all EU member states, plus Norway, Iceland and Liechtenstein). You are deemed to accept and agree to this by using Our Site and submitting information to Us. If We do store or transfer data outside the EEA, We will take all reasonable steps to ensure that your data is treated as safely and securely as it would be within the EEA and under the GDPR. Such steps may include, but not be limited to, the use of legally binding contractual terms between Us and any third parties We engage and the use of the EU-approved Model Contractual Arrangements. The safeguards used are:
    • Data is securely transferred via SSL encrypted protocol,
    • Data is stored securely in Data-at-rest encrypted MySql Database Servers located in the United States.
  • Data security is of great importance to Us, and to protect your data We have put in place suitable physical, electronic and managerial procedures to safeguard and secure data collected through Our Site.
  • Steps We take to secure and protect your data include:
    • Data is securely transferred via SSL encrypted protocol,
    • Data is stored securely in Data-at-rest encrypted MySql Database Servers located in the United States.
  • Notwithstanding the security measures that We take, it is important to remember that the transmission of data via the internet may not be completely secure and that you are advised to take suitable precautions when transmitting to Us data via the internet.
  • Do We Share Your Data?
  • We may share your data with other companies in Our group. This includes Our subsidiaries and Our holding company and its subsidiaries.
  • We may contract with third parties to supply products and services to you on Our behalf. These may include payment processing, delivery of goods, search engine facilities, advertising and marketing. In some cases, the third parties may require access to some or all of your data. Where any of your data is required for such a purpose, We will take all reasonable steps to ensure that your data will be handled safely, securely, and in accordance with your rights, Our obligations, and the obligations of the third party under the law. We may be in contact with:
Party Name Purpose Data Disclosed
Google Analytics, Flurry, Firebase Analytics Services Cookies, Visits, Page Views, Referer, Ecommerce Metrics
Google Adword, LinkedIn Advertisements Remarketing Cookie, Email
Stripe Inc, Paypal Inc Payments Email, Phone, Payment Details
  • We may compile statistics about the use of Our Site including data on traffic, usage patterns, user numbers, sales and other information. All such data will be anonymized and will not include any personally identifying information. We may from time to time share such data with third parties such as prospective investors, affiliates, partners and advertisers. Data will only be shared and used within the bounds of the law.
  • In certain circumstances We may be legally required to share certain data held by Us, which may include your personal information, for example, where We are involved in legal proceedings, where We are complying with the requirements of legislation, a court order, or a governmental authority. We do not require any further consent from you in order to share your data in such circumstances and will comply as required with any legally binding request that is made of Us.
  1. What Happens If Our Business Changes Hands?
  • We may, from time to time, expand or reduce Our business and this may involve the sale and/or the transfer of control of all or part of Our business. Data provided by users will, where it is relevant to any part of Our business so transferred, be transferred along with that part and the new owner or newly controlling party will, under the terms of this Privacy Policy, be permitted to use the data for the purposes for which it was originally collected by Us.
  • In the event that any of your data is to be transferred in such a manner, you will be contacted in advance and informed of the changes.
  1. How Can You Control Your Data?
  • When you submit information via Our Site, you may be given options to restrict Our use of your data. We aim to give you strong controls on Our use of your data (including the ability to opt-out of receiving emails from Us which you may do by unsubscribing using the links provided in Our emails or by emailing us directly at cidpneuropathy@gmail.com
  • You may also wish to sign up to one or more of the preference services operating in Your Country: The Telephone Preference Service (“the TPS”), the Corporate Telephone Preference Service (“the CTPS”), and the Mailing Preference Service (“the MPS”). These may help to prevent you receiving unsolicited marketing. Please note, however, that these services will not prevent you from receiving marketing communications that you have consented to receiving.
  1. Your Right to Withhold Information and Your Right to Withdraw Information After You Have Given it
  • You may access certain areas of Our Site without providing any data at all. However, to use all features and functions available on Our Site you may be required to submit or allow for the collection of certain data.
  • You may restrict your internet browser’s use of Cookies. For more information, see section 12 and Our Cookie Policy.
  • You may withdraw your consent for Us to use your personal data as set out in section in 5 at any time by contacting Us using the details set out in section 15, and We will delete Your data from Our systems.  However, you acknowledge this may limit Our ability to provide the best possible products and services to you.
  1. How Can You Access Your Data?

You have the legal right to ask for a copy of any of your personal data held by us. Please contact Us for more details at cidpneuropathy@gmail.com.

  1. What Cookies Do We Use and What For?
  • Our Site may place and access certain first party Cookies on your computer or device. First party Cookies are those placed directly by Us and are used only by Us. We use Cookies to facilitate and improve your experience of Our Site and to provide and improve Our products and services. For more details, please refer to section 5, above. We have carefully chosen these Cookies and have taken steps to ensure that your privacy is protected and respected at all times.
  • By using Our Site you may also receive certain third party Cookies on your computer or device. Third party Cookies are those placed by websites, services, and/or parties other than Us. We use third party Cookies on Our Site for advertising services. These Cookies are not integral to the functioning of Our Site.
  • All Cookies used by and on Our Site are used in accordance with current California, English and EU Cookie Law.
  • Before any Cookies are placed on your computer or device, you will be shown a message bar requesting your consent to set those Cookies. By giving your consent to the placing of Cookies you are enabling Us to provide the best possible experience and service to you. You may, if you wish, deny consent to the placing of Cookies; however certain features of Our Site may not function fully or as intended. You will be given the opportunity to allow only first party Cookies and block third party Cookies.
  • Certain features of Our Site depend on Cookies to function. EU Cookie Law deems these Cookies to be “strictly necessary”. Your consent will not be sought to place these Cookies. You may still block these Cookies by changing your internet browser’s settings but please be aware that Our Site may not work as intended if you do so. We have taken great care to ensure that your privacy is not at risk by allowing them.
  • The following first party Cookies may be placed on your computer or device:
Name of Cookie Purpose Strictly Necessary
PHPSESSID General Session Yes
__atuvc General Session Yes
__atuvs General Session Yes
__unam General Session Yes
ck_olark General Session Yes

and the following third party Cookies may be placed on your computer or device:

Name of Cookie Provider Purpose
km_ai KissMetrics Analytics
km_lv KissMetrics Analytics
km_vs KissMetrics Analytics
kvcd KissMetrics Analytics
_ga Google Analytics Analytics
_gat Google Analytics Analytics
_gid Google Analytics Analytics
NID Google Advertisement
SNID Google Advertisement
IDE Google Advertisement
__cfduid Crisp Customer Support
__cfduid Crisp Customer Support

 

  • Our Site uses analytics services may be provided by Google Analytics, Kissmetrics, Flurry, Firebase. Website analytics refers to a set of tools used to collect and analyze usage statistics, enabling Us to better understand how people use Our Site. This, in turn, enables Us to improve Our Site and the products andservices offered through it. You do not have to allow Us to use these Cookies, as detailed below, however whilst Our use of them does not pose any risk to your privacy or your safe use of Our Site, it does enable Us to continually improve Our Site, making it a better and more useful experience for you.
  • The analytics service(s) used by Our Site use(s) Cookies to gather the required information. Certain of these Cookies may be placed immediately when you first visit Our Site and it may not be possible for Us to obtain your prior consent. You may remove these Cookies and prevent future use of them by following the steps set out in this document.
  • The analytics service(s) used by Our Site use(s) the following Cookies:
Name of Cookie First / Third Party Provider Purpose
km_ai Third Party KissMetrics Analytics
km_lv Third Party KissMetrics Analytics
km_vs Third Party KissMetrics Analytics
kvcd Third Party KissMetrics Analytics
_ga Third Party Google Analytics Analytics
_gat Third Party Google Analytics Analytics
_gid Third Party Google Analytics Analytics
  • You can choose to enable or disable Cookies in your internet browser. Most internet browsers also enable you to choose whether you wish to disable all cookies or only third party cookies. By default, most internet browsers accept Cookies but this can be changed. For further details, please consult the help menu in your internet browser or the documentation that came with your device.
  • You can choose to delete Cookies at any time however you may lose any information that enables you to access Our Site more quickly and efficiently including, but not limited to, login and personalization settings.
  • It is recommended that you keep your internet browser and operating system up-to-date and that you consult the help and guidance provided by the developer of your internet browser and manufacturer of your computer or device if you are unsure about adjusting your privacy settings.
  1. Cookies

Our Site may place and access certain first party Cookies on your computer or device. First party Cookies are those placed directly by Us and are used only by Us. We use Cookies to facilitate and improve your experience of Our Site and to provide and improve Our [products and] services.  By using Our Site you may also receive certain third party Cookies on your computer or device. Third party Cookies are those placed by websites, services, and/or parties other than us. We use third party Cookies on Our Site for advertising services.  In addition, Our Site uses analytics services provided by [Insert name of analytics service provider(s)], which also use Cookies. Website analytics refers to a set of tools used to collect and analyse usage statistics, enabling Us to better understand how people use Our Site. For more details, please refer to Our Cookie Policy

Tracking Options and California Do Not Track Disclosures

Certain parts of our Site require cookies. You are free to set your browser or operating system settings to limit certain tracking or to decline cookies, but by doing so, you may not be able to use certain features on the Site or take full advantage of all of our offerings. Please refer to your Web browser’s or operating system’s website or “Help” section for more information on how to delete and/or disable your browser or operating system from receiving cookies or controlling your tracking preferences.

Our system may not respond to Do Not Track requests or headers from some or all browsers. To learn how to manage privacy and storage settings for Flash cookies, click here and here.

  1. Summary of Your Rights under GDPR

Under the GDPR, you have:

  • the right to request access to, deletion of or correction of, your personal data held by Us;
  • the right to complain to a supervisory authority;
  • be informed of what data processing is taking place;
  • the right to restrict processing;
  • the right to data portability;
  • object to processing of your personal data;
  • rights with respect to automated decision-making and profiling (see section 14 below).

To enforce any of the foregoing rights or if you have any other questions about Our Site or this Privacy Policy, please contact Us using the details set out in section 15 below.

  1. Automated Decision-Making and Profiling
  • In the event that We use personal data for the purposes of automated decision-making and those decisions have a legal (or similarly significant effect) on You, You have the right to challenge to such decisions under GDPR, requesting human intervention, expressing their own point of view, and obtaining an explanation of the decision from Us.
  • The right described in section 14.1 does not apply in the following circumstances:
    • The decision is necessary for the entry into, or performance of, a contract between the You and Us;
    • The decision is authorized by law; or
    • You have given you explicit consent.
  • Where We use your personal data for profiling purposes, the following shall apply:
    • Clear information explaining the profiling will be provided, including its significance and the likely consequences;
    • Appropriate mathematical or statistical procedures will be used;
    • Technical and organizational measures necessary to minimize the risk of errors and to enable such errors to be easily corrected shall be implemented; and
    • All personal data processed for profiling purposes shall be secured in order to prevent discriminatory effects arising out of profiling.
  • We currently make the following automated decisions:
    To send newsletters and internal campaign emails
  • We currently profile your personal data for the following purposes:
    To send newsletters and internal campaign emails
  1. Contacting Us

If you have any questions about Our Site or this Privacy Policy, please contact us by email at cidpneuropathy@gmail.com

  1. Changes to Our Privacy Policy

We may change this Privacy Policy as we may deem necessary from time to time, or as may be required by law. Any changes will be immediately posted on Our Site and you will be deemed to have accepted the terms of the Privacy Policy on your first use of Our Site following the alterations. We recommend that you check this page regularly to keep up-to-date.

What is a cookie?
A cookie is a small piece of data that may be stored on your computer or mobile device. It allows a website “remember” your actions or preferences over a length of time.Further information on cookies can be found
at http://ec.europa.eu/ipg/basics/legal/cookies/index_en.htmHow are they used on this site?
This site uses 2 different types of cookie,

  • Session Cookies
  • Persistent Cookies

Session Cookies are temporary cookies that are not stored on your computer or mobile device. They are used as part of the registration process for financial security purposes. A session cookie is also used to remember your language preference when viewing the site. These session cookies are erased when you close your browser, or after 20 minutes of inactivity.

Persistent cookies are those placed on your computer or mobile device for a pre-determined length of time when you visit this site. This site only places cookies that are specific to this site.

Cookies used on this website

Google Analytics Cookies used on this site

Cookie Name Expiration Time Description
_ga 12 months from last visit Used to distinguish visitors to site
_gat 10 minutes Used to throttle request rate
_utmt 10 minutes

 

Used to throttle request rate
_ _utma 12 months from last visit Used to distinguish visitors and pages visited. Records a unique ID, the date and time of first visit, time of current visit nd total number of visits made
_ _utmb 30 minutes from last visit Used to determine new sessions or visits. Stores the number of page views in current visit and start time of visit
_ _ utmc Session cookie Used to note that the visit has ended when browser is closed
_ _utmz 6 months Records the site you may have linked to our page from. Only records data if you clicked on a link to our site from a different website

Specific Cookies

The following cookies may be used on this site

Cookie Name Expiration Time Description
DataProtectionCookie 6 Months Records if you have clicked in the Cookie Notifaction and therefore does not display notification for 6 months.

Managing Cookies:

Within your browser you can choose whether you wish to accept cookies or not. Different browsers make different controls available to you and so we provide links below to popular manufacturers’ instructions on how you can do this. Generally, your browser will offer you the choice to accept, refuse or delete cookies at all times, or those from providers that website owners use (“third party cookies”), or those from specific websites.