porphyrianet.org is a publication of Ipnet, the International Porphyria Network, a non-profit learned association (or scientific association), having its office in Bergen, Norway.
Caroline Schmitt, Chair of the Webpage Working Group.
Web design & maintenance:
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Ipnet seeks the accuracy of the information and the publications on porphyrianet.org.
However, Ipnet cannot guarantee at any moment the accuracy of the information available on porphyrianet.org.
This information is non-contractual, and can be changed any time for update or integration of any new element or relevant data. Information provided on porphyrianet.org does not intend to replace professional medical care or advice. Only medical professionals are authorized to give medical advice. Even if Ipnet aims at keeping this information up-to-date, medical professionals are strongly encouraged to consult the most recent sources and to contact Ipnet in any case.
Ipnet cannot be held responsible for harmful, truncated or erroneous use of any information found on porphyrianet.org.
The medical professional using the information provided on porphyrianet.org is solely responsible for the diagnosis made.
General Data Protection Regulation and data privacy (GDPR) and Confidentiality
Ipnet may process your personal data. Your data is protected in accordance with the European General Data Protection Regulation (GDPR).
Ipnet is committed to guarantee the accuracy, integrity and relevance of the personal data collected.
If relevant, your surname, name and professional email address, your IP address and your professional phone number can be collected, in the context of Ipnet's scope as described in §2 of its Statutes & Bylaws.
If you are involved in the activities of expert center, medical laboratory, research project, clinical trial, patient organization in the porphyrias field, or as a contributor to Ipnet content as an expert, we can collect and register in our information system your surname, name, professional email address and your professional phone number in order to:
- Display your data on the Ipnet website and derived applications produced by Ipnet. You have indeed the option of declaring that you do not want your email and/telephone number to be published.
- Contact you by email and invite you to declare your new activities and/or to update those already registered on porphyrianet.org. We may also use your personal data to strengthen our scientific data and to credit your work as an expert.
- Invite you or to keep you informed of events relating to the porphyrias community (conferences, seminars...);
Any other use of your personal data than the ones cited above will be asked for in a specific and personal request.
Responsibilities, storage and duration
Data is collected and stored by porphyrianet.org servers as long as you do not ask for it to be deleted, or as long as the content mentioning it (text, article, study, research project or organization) is still available on porphyrianet.org.
In any case, the data keeping period will not exceed 10 years of inactivity, after which personal data will be erased.
Ipnet ensures that only authorized Ipnet members and service providers can access your personal data. Personal data can not by any mean be transferred to any other entity.
Storage of IP addresses (Ipnet web traffic and analytics tools)
IP addresses are automatically recorded by the system in server logs during one year, only for security analysis purposes. porphyrianet.org uses analytic tools to analyze its audience and this data is presented in an anonymized format. Only IP addresses are collected as personal data.
Storage of email addresses
Contact forms can be filled on porphyrianet.org. Data and content of these forms are not stored by the website. Only the user filling it and the final contact(s) can view the content of these messages. The content of these forms is not stored in porphyrianet.org database: it is sent as an email to the contact(s).
Porphyrianet.org use is limited to personal use only. Access to the site can be interrupted at any moment, without warning, especially in case of maintenance, or if Ipnet decides to suspend or stop this service.
Ipnet holds all intellectual property rights concerning the structure of the database, the format of the website, the logo and copyright, as well as the data and information on the site (content, texts, classifications, nomenclatures, and press statements).
No element or part of the site (including, but not limited to, the database and the information contained within) can be copied, translated, reproduced, exploited, published, electronically stocked or redistributed for commercial use without prior written consent. However, Ipnet allows the user to reproduce all or part of the site's content, in one saved or printed copy. This right applies strictly to personal, private and non-collective use of the material. Non-profit organizations are authorized to copy and distribute information from the site, as long as this information is neither modified nor sold. In addition to this, the terms of the intellectual property rights and the source of the information must be provided.
Porphyrianet.org contains links to other websites. These links are validated before online publication. However, Ipnet has no way of checking these sites continuously, and cannot offer any further guarantee concerning the respect of the current laws by these sites.
Creating a link to a page on the Ipnet portal Links to the home page or one of the Ipnet web pages are authorized: providing that these links are not used for commercial or advertisement purposes without prior written consent from Ipnet
providing that the name of the site (Ipnet), or an equivalent description of the portal, is clearly indicated on the link or next to it.
providing that the authors of the link have informed Ipnet prior to the publication of the link This authorization does not apply to websites publishing information of an illegal nature, be it violent, polemic, pornographic, racist, or bearing prejudice to the sensitivity of the majority.
Creating a link to a document published on the site All direct or embedded links to a document other than a webpage, notwithstanding their form or content, are prohibited, unless the express authorization of the editors of the portal Ipnet has been given. This includes in particular, but not exclusively, all documents in a graphic format (such as .jpg, .gif, .png), all multimedia or animated documents (such as .avi, .mov, .wmv, .flv, .swf, .ppt, .pps), all text or word-processed documents (such as .txt, .doc, .docx, .rtf, .xls, .pdf), as well as any other document which cannot be viewed using a standard internet browser.
We therefore recommend that you create links towards the Ipnet web pages containing the links towards these documents, instead of creating links directly to these documents.
Inclusion and using frames Any use or reproduction, even in part, of one of the elements of the Ipnet web portal on a third-party site using techniques described as ’inclusion’, frames, in-lining, or any other technique of a similar nature, is formally prohibited.
The editors and authors of the content and publications cannot be held responsible for errors and omissions made in the information published on porphyrianet.org, nor for the technical problems encountered on the website and on other websites you may be directed to through links on an Ipnet webpage, nor for the interpretation of information published on these sites, as well as the consequences of the use of this information.
A cookie is a small alphanumerical text file placed on your hard drive by the server of the website you visit, or by a third party server. A cookie allows a visitor to be recognized when they return to a web site. However, technically, the cookie allows a machine to be recognized, and not a user. A cookie can only be used by the server that placed it there. Cookies are used to access personalized pages without identifying oneself. Behavioral data are linked to the cookie number and stocked in the server which placed the cookies on the hard drive. A cookie only allows a nominative identification of the user if the user has previously registered on the website (within the limits previously evoked). When this website is consulted, data relative to the navigation by your device (computer, tablet, smartphone, etc. on our website are likely to be saved in the "Cookie" files installed on your device. Only the party having placed a cookie is able to read or modify the content contained therein
Browsing the Ipnet portal website can lead to the use of a persistent cookie (saved on your computer’s hard drive). These cookies have not been devised to collect personal information; they are uniquely intended to ease browsing of the site. For reasons due to the technology used by one of our contractors, a session cookie may be used when visiting our website in order to make statistical analyses and to record site traffic. If you wish, you can dis-activate this cookie by changing the settings of your internet browser.
Cookies used by third parties
Cookies can also be placed by partner companies (third party cookies). The cookies can also saved via our site on your device by social media when you use the social media buttons (« Facebook », « Pinterest », «Instagram », « Google + » etc.).
Click the Tools button, and then click Internet Options.
In the 'General' tab, in Browsing History, click on Parameters.
Click on the button 'Show files'.
Click on the column header 'Name' in order to sort files by alphabetical order, then go through the list until you see files starting with 'Cookie' (all cookies use this prefix and contain the name of the website which created the cookie).
Select and delete the following cookies: 'displayCookieConsent', 'PHPSESSID', 'BE_USER_AUTH' and 'BE_PAGE_OFFSET'.
Close the window containing the list of files, then click twice on OK to return to Internet Explorer
if you use Firefox
Go to the 'Tools' tab of the browser, then select 'Options'
In the window that opens, choose 'Privacy' and click on 'Show cookies'.
Look for the files containing the names mentioned above. Select them and delete them
if you use Safari
In your browser, choose the menu 'Publication preferences'.
Click on 'Security'.
Click on 'Show cookies'.
Select the cookies containing the names mentioned above and click on Delete or Delete all.
After deleting the cookies, click on Finish.
if you use Google Chrome
Click on the Tool menu icon.
Click on the tab Advanced options and go to 'Confidentiality'.
Click Show cookies.
Find the files that contain the names mentioned above. Select them and Delete them.
Click Close to go back to your browser.
Last update: November 2023