ICOSEP stands for International Coalition of Organizations Supporting Endocrine Patients. As our name states, we are a coalition of patient advocate associations representing more than 35 countries, medical societies and child advocate supporters.
The type of data we collect and why we collect it
ICOSEP collects personal information from its members, health professionals, visitors to the website, and other individuals who interact with us. We collect most of this information directly from you when we interact with you, such as when you submit a Membership Form, meet you in person, message each other via social media outlets, emails, and during telephone conversations. In some cases, we may collect personal information about you from a third party, such as a family member.When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.
ONE IMPORTANT THING TO NOTE: Members of ICOSEP and representatives of ICOSEP including The MAGIC Foundation have a shared annual educational project called the Children’s Growth Awareness Educational Initiative. It is a campaign to help educate families around the world about the importance of monitoring children’s growth. As we are predominantly a “rare” disorders community, it is difficult to find people to unite and help share this annual message. Therefore, we use opportunities to ask people, organizations and businesses, as well as medical professionals to help share this information each year. Therefore, a family may contact us for help and we retain their contact information, to email them and ask them to send out an email once a year to help children. WE DO NOT bombard families or businesses with solicitations.
Our website and other online resources are created by companies who use services outlined here: https://automattic.com/privacy/.
- Information about ICOSEP members, including contact information such as names, physical addresses, email addresses, and telephone numbers can be collected. Information about health professionals and organizations, including contact information such as names, physical addresses, email addresses and telephone numbers can be collected. Health related information including experiences with medical conditions, which are presented to us and not required or requested, may can be collected.
If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.
- Contact forms
The contact forms on our website will require certain text boxes to be completed in order to submit the form. If you feel this information is not something you want to share and you want to contact us, please email us directly at firstname.lastname@example.org.
If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year. If you have an account and you log in to this site, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.When you log in, we will also set up several cookies to save your login information and your screen display choices. Login cookies last for two days, and screen options cookies last for a year. If you select “Remember Me”, your login will persist for two weeks. If you log out of your account, the login cookies will be removed.If you edit or publish an article, an additional cookie will be saved in your browser. This cookie includes no personal data and simply indicates the post ID of the article you just edited. It expires after 1 day.
- Embedded content from other websites
- Analytics- How and/or if we share your data and contact information
ICOSEP’s purpose is to network any and all support systems, businesses, patient groups and humanitarian devoted individuals who unite to help children with medical conditions impacting their growth. We network groups country to country, organization to organization, or globally. We work quickly to generate the most efficient system to help the most children as fast as possible.Our primary work is done in a business to business style, meaning that we (ICOSEP representatives) do not engage with patients unless we are referring someone to a local resource. However, occasionally individuals will contact us with requests and outline their information. During our reply to such families, we refer to their private information so that they know we are addressing them correctly. And we routinely copy the organization or business representative to facilitate their future communications. We do our best to network and connect the individual with the health service and organization who will effectively assist them in their independent situation.
- How Long We Retain Your Data
If you leave a comment on our website, social media sites or email us, the comment and its metadata are retained indefinitely. This is so we can recognize and approve any follow-up comments automatically instead of holding them in a moderation queue.For people who register their business or organization via our online website application, we retain the personal information provided to ensure they are listed for the ICOSEP networking and communications. Registrants can request deletion of their information at any time via an email to ContactUs@icosep.org.
- Where Your Data May Be Sent
Visitors to our websites or social media sites should be aware that comments may be checked through an automated spam detection service.
If you wish to stop receiving communications
If you wish to stop all communications from ICOSEP, put REMOVE in the subject of an email to ContactUs@icosep.org.
To remove your name and contact information from any member organizations or MAGIC, you must contact them directly.