Information Collection, Use and Storage
The only information that the CSRF collects is information that you provide to us through forms used on this website. These forms require certain information, such as your email address, that will only be used to respond to your inquiry. Joining the CSRF as a free or full member means that you voluntarily desire to be a member of the CSRF. The CSRF does not sell or rent this information to anyone. Sending the CSRF an email or filling out a Contact Us or Contact this Member form, will not put you on our email list and emails sent to us are not shared with anyone except another member that you would like to contact.
The free or full membership forms require a certain amount of information and ask for other information that is not required, but useful for providing services to our members, such as patient networking. During the application process, you are asked:
- If you would like to receive emails from the CSRF. If you check this box, it gives the CSRF permission to send you emails that the CSRF considers to contain useful information.
- If you would like to receive emails/phone calls from other Cushing’s patients. If you check this box, it gives the CSRF permission to contact you to let you know that another patient would like to contact you, however we will not provide your email address/phone number to them.
- If you would like the CSRF to provide your phone or email address to other Cushing’s patients. Checking either box, gives the CSRF permission to provide your email/phone to other patients that contact us, for example, someone in your state, etc.
- If you are requesting a full membership, you will also be asked if you wish your first name, last initial, city, state, country, cause of Cushing’s, and email or phone number to appear in the next print CSRF newsletter under New Members. Checking this box give the CSRF permission to list you in our newsletter so others, for example in your state, can contact you. Print newsletters are mailed only to CSRF, donors and a number of doctors, distributed at conferences and at other times to illustrate CSRF activities. Doctor’s may elect to provide copies of the print CSRF newsletter in their offices/clinics. When example newsletters are posted for public viewing on our website, only your first name, last initial, state and cause of Cushing’s will appear. If posted in an area only available to CSRF members, your first name, last initial, state, cause of Cushing’s and email address will appear.
Patient Stories and Photos
The CSRF newsletter contains Patient Stories and photos. If you submit your personal story and photos to the CSRF and approve the final copy by email, this gives the CSRF permission to print your story in our print newsletter with whatever contact information you would like. When stories are posted to our website, your email address will not appear, but other patients will be able to contact you through the CSRF. When entire newsletters are posted to our website as examples that are viewable to the general public, your first name, last initial and state will appear, however, your email address/phone will not appear. Full newsletters available only to CSRF members on our website will retain your email address, but not your phone number.
When you submit photos and if the CSRF wishes to use them for purposes other than in a patient story, we will make every effort to contact you. If you cannot be contacted, the CSRF reserves the right to use your photos as we see fit, for example in a brochure or on an exhibit booth. If you cannot be contacted, the CSRF will not permit other publishers to use your photos, for example in text books, etc.
Your Access to and Control Over Information
You may opt out of any future contacts from us at any time by contacting us via email. You may change information contained in your member profile at any time by contacting us.
We take precautions to protect your information. Wherever we collect sensitive information online, such as patient information, that information is encrypted and transmitted to us in a secure way. You can verify this by looking for a closed lock icon at the bottom of your web browser, or looking for “https” at the beginning of the address of the web page.
We use “cookies” on this site. A cookie is a piece of data stored on a site visitor’s hard drive to help us improve your access to our site and identify repeat visitors to our site. For instance, when we use a cookie to identify you, you would not have to log in a password more than once, thereby saving time while on our site. Cookies can also enable us to track and target the interests of our users to enhance the experience on our site. Usage of a cookie is in no way linked to any personally identifiable information on our site.
This web site contains links to other sites. Please be aware that we are not responsible for the content or privacy practices of such other sites. We encourage our users to be aware when they leave our site and to read the privacy statements of any other site that collects personally identifiable information.
From time-to-time our site requests information via surveys. Participation in these surveys is completely voluntary and you may choose whether or not to disclose your identity. Information from these surveys will be used to guide the CSRF in the service of our membership.
Exclusion of liability
The CSRF hereby excludes all and any losses, liabilities, claims, damages, expenses or costs arising in connection with your ability or inability to use this website, your use of any information obtained from this website, and any viruses, spyware, cookies that are spread or gathered through this website.