General
This privacy policy sets out how SETBP1 Society uses and protects any information that you provide to SETBP1 Society when you use the setbp1.org website, respond to a survey, or become a member of the organization. SETBP1 Society is committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified, you can be assured that it will only be used in accordance with this privacy statement. We will not sell, distribute or lease your personal information to third parties unless we have your permission or are required by law to do so. We may use your personal information to send you information that we think you may find of interest. SETBP1 Society may change this policy from time to time by updating this page. You should check this page to ensure that you are happy with any changes. This policy is effective from May 1, 2018.
What we collect
The setbp1.org website will not automatically collect any personal information from visitors. If you would like to receive information from SETBP1 Society, or become a member of this organization, you may fill out our Contact Form or send us an email at info@setbp1.org. You may choose to share all or only some of the information on the Contact Form.
What we do with the information we gather
We require this information to understand your needs and to respond appropriately and in particular for the following reasons:
- Internal record keeping
We may use the information to improve our communications and information delivery. - To send you information
We may periodically send information such as newsletters, organizational updates, news about medical research on SETBP1 disorder or new diagnostic or treatment options, or other information that we think you may find interesting or helpful using the email address or mailing address you have provided.
We do not sell or share any information with other individuals or organizations.
Security
We are committed to ensuring that your information is secure. In order to prevent unauthorized access or disclosure, we utilize Simons VIP as our registry (https://simonsvipconnect.org/privacy-policy.html) and MailChimp for email communications (https://mailchimp.com/legal/privacy/). We have applied physical, electronic, and managerial procedures to safeguard and secure the information we collect online.
How we use cookies
A cookie is a small file that asks permission to be placed on your computer’s hard drive. We use traffic log cookies to identify which pages are being used. This helps us analyze data about webpage traffic and improve our website in order to tailor it to visitor needs. We only use this information for statistical analysis purposes and it does not provide identifiable information. Overall, cookies help us provide you with a better website experience by enabling us to monitor which pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us. You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from experiencing full advantage of the website.
Links to other websites
Our website may contain links to other websites of interest. However, once you use these links to leave our site, you should note that we do not have any control over other websites. Therefore, we cannot be responsible for the protection and/or privacy of any information that you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statements applicable to websites in question.
Controlling your personal information
You may choose to restrict the collection or use of your personal information in the following ways:
- when you are asked to fill in a form on the website, you may choose not to provide any/all of the information requested
- if you have previously agreed to share your personal information with us, you may change your preference(s) at any time by emailing us at info@setbp1.org
- If you believe that any information we are holding on you is incorrect or incomplete, please email us as soon as possible at the above address. We will promptly correct information according to your direction/instruction.
Surveys
SETBP1 Society occasionally produces surveys through the following platforms:
QuestionPro – https://www.questionpro.com/help/privacy-policy.html
SurveyMonkey – https://www.surveymonkey.com/mp/policy/security/
These surveys are designed to be anonymous. However, respondents should be aware that in responding to surveys they could be disclosing information that could make them personally identifiable to SETBP1 Society. Respondents to surveys should be aware that they alone are responsible for the content of their responses.
Questions, complaints, or requests to rescind consent to share information may be addressed to info@setbp1.org.