Last Updated: July 20, 2021
Neuromuscular Disease Foundation (NDF) (“us”, “we”, or “our”) operates the CureGNEM.org website (hereinafter referred to as the “Service”).
This webpage informs you of our policies regarding the collection, use, and disclosure of personal data when you use our Service and the choices you have associated with that data.
WE RESPECT YOUR CONFIDENTIALITY
Your personal information will be held in strict confidence. We use your information only for its intended business purpose. We do not sell or trade your information to other organizations or individuals.
WE PROTECT YOUR INFORMATION
If you choose to send us email, we may retain the contents of your email message, our reply and your email address as part of our ongoing customer service efforts. We reserve the right to contact you after you have contacted us and may send future email and/or surveys to you about The Neuromuscular Disease Foundation. You may notify us via email if you wish to discontinue electronic communication.
WE KEEP ACCURATE RECORDS
We keep your personal information as accurate, complete, and up to date as is required to fulfill the purpose(s) for which you provided it to us. Upon written request we will remove your personal information from our databases, except where legislation or regulation requires our retention of it (for example, charitable giving history tied to income tax receipts). You may request a copy of your information, request to delete your information or request to remove yourself from our databases by communicating with us via the contact information listed at the end of this policy.
Service is the CureGNEM.org website operated by NDF.
- Personal Data
Personal Data means data about a living individual who can be identified from that data (or from other information either in our possession or likely to come into our possession).
- Usage Data
Usage Data is data collected automatically and either generated by the use of the Service or from the Service infrastructure itself (for example, the duration of a page visit).
Cookies are small files stored on your device (computer or mobile device).
INFORMATION COLLECTION AND USE
We collect several different types of information for various purposes to provide and improve our Service to you.
While using our Service, we may ask you to provide us with certain personally identifiable information that can be used to contact or identify you (“Personal Data”). Personally identifiable information may include, but is not limited to:
- Email address
- First name and last name
- Phone number
- Address, city, state, ZIP/postal code, province
- Cookies and Usage Data
We may also collect information on how the Service is accessed and used (“Usage Data”). This Usage Data may include information such as your computer’s Internet Protocol address (e.g. IP address), browser type, browser version, the pages of our Service that you visit, the time and date of your visit, the time spent on those pages, unique device identifiers and other diagnostic data.
TRACKING AND COOKIES DATA
Cookies are files with a small amount of data which may include an anonymous unique identifier. Cookies are sent to your browser from a website and stored on your device. Other tracking technologies are also used such as beacons, tags and scripts to collect and track information and to improve and analyze our Service.
You can instruct your browser to refuse all cookies or to indicate when a cookie is being sent. However, if you do not accept cookies, you may not be able to use some portions of our Service.
Examples of Cookies we use:
- Session Cookies. We use Session Cookies to operate our Service.
- Preference Cookies. We use Preference Cookies to remember your preferences and various settings.
- Security Cookies. We use Security Cookies for security purposes.
USE OF DATA
NDF uses the collected data for various purposes:
- To provide and maintain the Service
- To notify you about changes to our Service
- To allow you to participate in interactive features of our Service when you choose to do so
- To provide customer care and support
- To provide analysis or valuable information so that we can improve the service
- To monitor the usage of the Service
- To detect, prevent and address technical issues
TRANSFER OF DATA
Your information, including Personal Data, may be transferred to and maintained on, computers located outside of your state, province, country or other governmental jurisdiction where the data protection laws may differ than those in your jurisdiction.
If you are located outside United States and choose to provide information to us, please note that we transfer the data, including Personal Data, to the United States and process it there.
DISCLOSURE OF DATA
NDF shall provide you with the recipients or categories of recipients of your personal data, if any.
NDF may disclose your Personal Data in the good faith belief that such action is necessary to:
- To comply with a legal obligation
- To protect and defend the rights or property of NDF
- To prevent or investigate possible wrongdoing in connection with the Service
- To protect the personal safety of users of the Service or the public
- To protect against legal liability
SECURITY OF DATA
The security of your data is important to us but remember that no method of transmission over the Internet or method of electronic storage is 100% secure. While we strive to use commercially acceptable means to protect your Personal Data, we cannot guarantee its absolute security.
NDF will work within 72 hours of a data breach to gather all related information, conduct a thorough investigation, inform regulators and impacted individuals of the breach, identify what personal data has been impacted and how; and draft a comprehensive containment plan, reporting data breaches to the relevant regulator. If we are unable to provide a notification within the 72-hour window, we will provide reasonable justification for the delay, which may be caused by potentially adding additional disruption to regular business operations and exasperating administrative hassle.
We may employ third party companies and individuals to facilitate our Service (“Service Providers”), to provide the Service on our behalf, to perform Service-related services or to assist us in analyzing how our Service is used. These third parties have access to your Personal Data only to perform these tasks on our behalf and are obligated not to disclose or use it for any other purpose.
We use Google Analytics to monitor and analyze the use of our Service.
LINKS TO OTHER SITES
- By email: info@CureGNEM.org
- By visiting this page on our website: CureGNEM.org /contact/
- By phone number: 310-721-1605
- By mail: 269 S. Beverly Drive, #1206, Beverly Hills, CA 90212