Privacy Policy - CUTIS LAXA INTERNATIONALE

LEGAL INFORMATION AND PRIVACY POLICY OF THE WEBSITE

Updated on 2^nd June 2018, complying with the General private Data Protection Regulation

I-IDENTITY

This website is under the total responsability of the association here below :

CUTIS LAXA INTERNATIONALE

138 Impasse de Champs Gervais
74890 Bons en Chablais
France
Tel/Fax : 33 (0)4 56 30 74 43
e-mail : mcjlboiteux@aol.com
Site : www.cutislaxa.org

We are a voluntary, non-profit, Association under French Law of 1901.
Our statutes have been registered by La Prefecture of La Rochelle(France) under the number 0173004943, on 11th november 2001.
Published in the French Government Paper on 15th December 2001.
N°SIRET : 44251763700017
Nationally agreed by the French Department of Health in the order of 11th August 2006, published on 24th August 2006. Agreement renewed by the Decree of 16^th July 2016 for a period of 5 years..

II – LEGAL DISCLAIMER

All material found at this site is for educational and informative purposes only. It is not intended to substitute medical or professional services nor replace the relationship that exists between patients, their physicians and other health care providers. No action, treatment, independent entities or persons are endorsed and all information is provided without warranty. Any questions should be referred to your physicians and in particular, any changes in treatment or care should be made in conjunction with your medical team.

COPYING, REPRODUCING AND/OR ANY OTHER USE OF THE PHOTOS and/or DIAGRAMS OF THIS SITE IS STRICTLY FORBIDDEN.

III-CONTENTS EDITORIAL

The pages on this site are written and translated only by members of the board of the association.
All medical information and all contents relating to health are verified and validated following indications on the relevant page.
The editorial director is Marie-Claude Boiteux, President of the Association.

IV-PRIVACY POLICY

Confidentiality of data relating to individual patients and visitors to a medical/health Web site, including their identity, is respected by this Web site. The Web site owners undertake to honour or exceed the legal requirements of medical/health information privacy that apply in France and in Europe following the General Data Protection Regulation (GDPR). We undertake not to disclose personal data to any third party.

We guarantee to each and every patient or patient’s family full confidentiality for the data they give us. We will only pass on information to other patients/families or medical staff if the patients/families have given us their signed consent..

PERSONAL DATA

In general, it is possible to visit CUTIS LAXA INTERNATIONALE website without sharing any of your personal data. In any case, you are not obliged, in any way, to share this information with CUTIS LAXA INTERNATIONAL except in the two specific cases mentionned below : On-Line Contact Form and On-Line Fee/Donation.

In all cases, CUTIS LAXA INTERNATIONAL is the only recipient of your Personal Data, and it will never be disclosed to any third party, nor used for commercial purpose.

ON LINE CONTACT FORM

When using our on-line contact form, your personal data is registered so we can answer your comments and meet your personal needs. It will also allow us, later on, to contact you via email for administrative, information or communication purpose.

This personal data is kept and processed on computer for mailshot and e-mailing. Identifiable personal data is solely accessible by Cutis Laxa Internationale secretaryship. Computers and servers used to process identifiable personal data are kept in a totally secured environment.

ON-LINE FEE AND/OR DONATION FORM

When using our on-line fee and/or donation form, your personal data is registered so we can send you all necessary and legal documents linked to your fee and/or donation.(tax receipt). . It will also allow us, later on, to contact you via post and/or email for administrative, information or communication purpose.
This personal data is kept and processed on computer for mailshot and e-mailing. Identifiable personal data is solely accessible by Cutis Laxa Internationale secretaryship. Computers and servers used to process identifiable personal data are kept in a totally secured environment.
We will retain this data as long as you will renew your fee and/or donation and if not for a maximum of 3 years.
We will not retain any of your bank account data. This data is not processed by us..

ACCESS AND RECTIFICATION OF YOUR PERSONAL DATA

Right for access and communication of data

You can have access to your personal data .

Nevertheless, due to the necessary security and confidentiality in processing personal data CUTIS LAXA INTERNATIONALE must comply with, you are informed that your request will be processed only if you can prove your identity by sending a scan of your valid identity card (if your request is made via email) or a signed copy of your valid identity card (if your request is sent via postal mail).
We inform you that CUTIS LAXA INTERNATIONALE will be entitled, if needed, to oppose any obviously excessive request ( too numerous, repetitive or systematic) .
In order to help you in your request, especially if you wish to write and send it by post to the address mentioned above, you can find a standard letter written by the French National Commission about Computers and Freedom ( « CNIL ») at https://www.cnil.fr/fr/modele/courrier/exercer-son-droit-dacces

Right to rectify your personal data

You can ask for rectification, updating, locking or even deleting your personal data that might have become inaccurate, erroneous, incomplete or obsolete.
You can also define the general and specific guidelines for your personal data after your death. If necessary, a dead person’s heir/heiress can ask to take into consideration their relative’s death and/or to process the necessary updates.
In order to help you in your request, especially if you wish to exercise your rights or your deceased relative’s rights by sending a written request to the address mentioned above, you can find a standard letter written by the French National Commission about Computers and Freedom ( « CNIL ») at

https://www.cnil.fr/fr/modele/courrier/rectifier-des-donnees-inexactes-obsoletes-ou-perimees

V-USING COOKIES

During your first visit of the CUTIS LAXA INTERNATAIONALE website, you are informed, via a banner at the bottom of your screen, that information linked to your browsing might be registered in files named « cookies ». Our Policy regarding the use of cookies allows you to understand better the conditions we use concerning browsing our website.
CUTIS LAXA INTERNATIONALE, as editor of this website will be introducing a cookie on the hard disk of your device (computer, laptop, mobile,ets) to guarantee an easy and optimal browsing on our website.
« Cookies » (or loging witnesses) are little text files with small size allowing us to recognize your computer, laptop or mobile so we can personalise the services we offer.
The data we collect through cookies do not allow, in any way, to identify you namely. They are solely used for our needs to improve interactivity and performance of our website. None of this data is forwarded to any third party, unless CUTIS LAXA INTERNATIONALE has previously received the consent to do so or unless forwarding this dzata is requested by the law, or ordered by a court or any other administrative or legal authority entitled to know it.
Cookies measuring audience develop statistics on the frequency of visits and the use of various elements of the website (such as the contents and pages you have visited). This information help us improve ergonomics of CUTIS LAXA INTERNATIONALE’s website. An audience measuring tool is used on this website : Google Analytics.

If you do not want that we track your visist to our site you can disable tracking in your browser here:

VI-FUNDING

This website is hosted by GANDI (www.gandi.net). Its conception, creation and updates are done by volunteers. Any eventual expense linked to hosting, creation and maintenance of the website are totally paid by the association (i.e. : software). We do not receive any specific grant for this website. We do not accept any advertising nor receive any funds from advertisements or trade.

Our sources of revenue are as follow :

Membership fees and/or donations from private people ;
Selling various items for the benefit of the association
A few small grants from local public communities.

VII-LINKS TO OTHER WEBSITES

This website contains addresses and direct links to websites of institutions, organisations, federations or associations linked to disability in general and rare, orphan and/or genetic conditions in particular. These links are for informative purposes only. We do not guarantee their content and do not hold any responsability of them.