Global Ichthyosis Syndrome Network Foundation

Information about a Public Benefit Organisation

  • Sinterklaas
  • Trichothiodystrofie
  • Congenitale ichthyosiforme erythrodermie
  • Sjgren-Larsson
  • Ichthyosis Vulgaris
  • harlekijn ichthyosis

'Global Ichthyosis Syndrome Network Foundation' respects the privacy of all visitors to the Global Ichthyosis Syndrome Network Foundation web site and takes the utmost care to ensure that any personal information that you provide to the Global Ichthyosis Syndrome Network Foundation will be kept confidential. By using this site, you accept the terms of this policy. Any changes to this policy will be published on the Global Ichthyosis Syndrome Network Foundation web site.

'Global Ichthyosis Syndrome Network Foundation' will only use the personal information that you provide, to help make your use of the Global Ichthyosis Syndrome Network Foundation site and the processing of any donations that you place, as easy and efficient as possible. Any other use will be made solely after obtaining your express permission. 'Global Ichthyosis Syndrome Network Foundation' will not sell your personal information to a third party and will only pass your personal information to a third party if this is necessary for the processing or delivery of your order.

'Global Ichthyosis Syndrome Network Foundation' uses the data provided by members and donors for the following services:

  • When a donor places an order, we require the donor's name, email address and payment details in order to process the donation and to keep the donor informed as to the status of the donation.
  • In order to ensure that donating at 'Global Ichthyosis Syndrome Network Foundation' is as easy and efficient as possible, with the donor's permission, we store details relating to the donation and the use of our services. This enables us to personalise the web site to the specific preference of each donor and make suggestions that are relevant to the donor.
  • With the donor's permission, we use the donor's details to inform them of relevant developments on the web site and special offers and promotions. A donor can have this facility turned off by sending an email to the This email address is being protected from spambots. You need JavaScript enabled to view it..
  • If you create a personal account with the 'Global Ichthyosis Syndrome Network Foundation', all details will be stored in a secure section of the web site. The details that are stored in a personal account with the 'Global Ichthyosis Syndrome Network Foundation' include the donor's name, email address and payment details, so that this data does not need to be re-entered on a repeat visit to the web site.
  • Details pertaining to the use of our web site and the feedback that we obtain from our donors help us to further develop and improve the web site.

'Global Ichthyosis Syndrome Network Foundation' will not sell your personal information.
The 'Global Ichthyosis Syndrome Network Foundation' will not sell your personal information to a third party and will only pass your personal information to a third party if this is necessary for the processing or delivery of your order or donation. Our employees and partners are required to respect the confidentiality of your personal details.

Your personal details are safe with the 'Global Ichthyosis Syndrome Network Foundation'.
Because we respect the trust that you have placed in us, we will exercise extreme care with processing and storing your personal details. When you place a donation or access your 'Global Ichthyosis Syndrome Network Foundation' account, be assured that you will be using the latest technology, such as “the Secure Socket Layer”, to ensure optimal security. For technical and operational reasons, it can be necessary to move your data to servers operated by partners of the 'Global Ichthyosis Syndrome Network Foundation'. Your personal details shall however, remain protected and confidential at all times.

Data breach.
If you suspect that there is a data breach, then we ask that you to report this as soon as possible via our This email address is being protected from spambots. You need JavaScript enabled to view it..

Should you have any questions regarding the 'Global Ichthyosis Syndrome Network Foundation' privacy policy, please send an email to the This email address is being protected from spambots. You need JavaScript enabled to view it.. Our employees will be happy to assist you if you require further information or need help to change your details or settings.

Any changes to our privacy policy will be reflected in the most recent copy of this document on our web site.

Any usage of the contents of this web site (including, but not limited to, text, graphical material, logo’s, designs, sound and all intellectual properties) such as copying, changing, reproducing, publishing and distributing is forbidden without prior consent in writing from 'Global Ichthyosis Syndrome Network Foundation'. Unauthorised use of (any part of) this web site, can constitute infringement of copyright, patent or other unlawful act and is therefore strictly forbidden.

This web site has been created and is maintained, with the greatest of care. However, 'Global Ichthyosis Syndrome Network Foundation' cannot guarantee the content or operation of the web site.'Global Ichthyosis Syndrome Network Foundation' cannot be held responsible for interruptions or failure in the operation of the web site, or for the accuracy, completeness and actuality of the content. 'Global Ichthyosis Syndrome Network Foundation' can also not be held responsible for the content of a third party website to which a user is redirected via a hyperlink on the Global Ichthyosis Syndrome Network Foundation web site. 'Global Ichthyosis Syndrome Network Foundation' can also not be held responsible for content published by third parties.

'Global Ichthyosis Syndrome Network Foundation' reserves the right to change any content of the web site, or to restrict access to services offered on the web site, without prior notice. 'Global Ichthyosis Syndrome Network Foundation' cannot be held responsible for damages resulting from changes in the content or the services offered on the web site or for the restriction of access to the web site.

If you notice any error on the web site, please report it to the This email address is being protected from spambots. You need JavaScript enabled to view it.. In consultation with the 'Global Ichthyosis Syndrome Network Foundation' these errors will be corrected as soon as possible.

Ichthyosis: living with a congenital skin condition.

Ichthyosis. In the Pocket Dictionary of medicine it is described as: 'fish scales disease, persistent congenital skin condition by scale formation'.

In Ichthyosis is the balance between the production of new skin cells and the molting of the skin is disrupted. Ichthosis is hereditary or caused by a spontaneous genetic mutation. The skin can create too many new skin cells or cells cannot peel easily. That leads to a disruption in the normal skin process of creation and breakdown. This gives scales on the skin.

As you can read on this website, there are several conditions that fall under this umbrella term. This site is an information resource for anyone who want to be informed about this (yet) not to cure disease.

Latest News:

New GISN-website
Saturday, 02 December 2017
On 1st of December 2017, the new website of Global Ichthyosis Syndrome Network (GISN) has gone online. On this new site we want to combine all information that we have available at this moment. Also, a complete new member system has been developed...

Read More...

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This website is made possible by donations to the Global Ichthyosis Syndrome Network Foundation.

The patients that we represent can use your donation very well. Amounts that have been granted exclusively benefit the patients. Board members of the Foundation do not charge any costs. Donate via this website by clicking on the donate button below or click on 'Donate' at the top in the main menu.

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