If you have any queries about this policy please contact the International Neuroendocrine Cancer Alliance, 198 Tremont Street, Box 456, Boston MA 02116, United States or email email@example.com
INCA may change this policy from time to time by updating this page. You should check this page at regular intervals to ensure that you are happy with any changes made. This policy is effective from 24th August 2018. What information do we collect about you?
INCA will only collect personal data that is relevant to the carrying out of the legitimate purposes and function of INCA. We will only hold information you personally consent to provide.
Information held by INCA may include:
- name and, where relevant, job title
- contact information including address, postcode, telephone/mobile number and email
- preferences – that is, preferred mode of contact (by phone, letter or email), home, work or other address/contact details
- type of contact – NET patient, family member/friend of a NET patient, healthcare professional, charity, institution, business/company, or other
- where relevant to your enquiry – clinical information including diagnosis, treatment, care provider, concerns, type of advice sought (and provided)
- interests – for example – newsletter, ebulletin and notification regarding our services (Fundraising, Events, Surveys, Clinical Information Updates, Research, Volunteering)
- resources utilised – for example phoneline query and/or information sent to you (handbook, factsheet, wallet cards, fundraising packs, banners), and / or any other resources we have provided
- resources provided – for example donations pledged/given, time volunteered, and/or other resources/services you have provided
- any other information you have legally consented to provide. What we do with the information we gather? We will only collect (and hold) information relevant to the carrying out of the legitimate purposes and function of the International Neuroendocrine Cancer Alliance. Our primary purpose is to support and inform patients, and their friends/families, from diagnosis, through treatment and/or surveillance, to living with malignant Neuroendocrine Tumours – that is, lifelong support. We utilise data to enable us to understand your informational and support needs – this allows us to develop, maintain and focus our services and for audit /internal record keeping.
We will hold your information for as long as is required to continue to provide you with the services you need/request or until you ask us to delete it (in its entirety or select part) / withdraw consent / unsubscribe.
We will not sell, distribute or lease your personal information to any third party without your explicit, written, permission or are required by law to do so.
From time to time, we are approached for market research purposes – we do not endorse any product or service the company may provide. We will not release any information about you without your explicit consent to do so. If your consent is given, we will only provide your stated/preferred contact details – the company should then seek further consent, from you, for any further information required – please note that we are not responsible for their conduct or for any information you may or may not provide/receive from them.
Controlling your personal information
You may choose to restrict the collection or use of your personal information in the following ways:
- if you have previously agreed to us using your personal information for direct marketing purposes, you can change your mind at any time by writing to INCA, 198 Tremont Street, Box 456, Boston MA 02116, United States or emailing us at firstname.lastname@example.org and clearly marking the subject box ‘unsubscribe’ or click the unsubscribe button on any mailing list. Please note that if you click unsubscribe you will be removed from all mailing lists. If you believe that any information we are holding on you is incorrect or incomplete, please write to or email us as soon as possible, at the above address. We will promptly correct any information found to be incorrect. You may request details of personal information which we hold about you under current General Data Protection Regulation. If you would like a copy of the information held on you please write to INCA, 198 Tremont Street, Box 456, Boston MA 02116, United States. You will be notified if a fee is required to process your request.
If you use standard email to communicate with INCA, including email links and email forms on this website, this will not be secure and you should be aware that INCA cannot guarantee that it remains confidential.
In order to prevent unauthorised access or disclosure we have made every effort to safeguard and secure the information when received at INCA.
Cookies are small files of information which save and retrieve information about your visit to our site – for example, how you entered our site, how you navigated through the site, and what information was of interest to you. The cookies we use identify you merely as a number.
Cookies help us analyse web traffic to identify which pages are being used. This helps us improve our website in order to tailor it to customer needs. We only use this information for statistical analysis purposes.
Overall, cookies help us provide you with a better website, 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.
Links to other websites
Our website may contain links to enable you to easily visit other websites of interest or to make online donations. However, once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which 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 statement applicable to the website in question.