Disclaimer

Nothing on or referenced by this site should be construed as offering medical advice.

This site contains scientific and educational information on achondroplasia. Whilst every effort has been made to ensure the factual accuracy of the contents, no liability can be accepted for any use of the information in the site and/or links from it.

However:

CESAS gives no warranty and accepts no responsibility for the accuracy or the completeness of the material;
No reliance should be made by any user of the material, but instead, the user should check for confirmation with CESAS; and
CESAS reserves the right to make changes at any time, as it deems appropriate
CESAS provides external links as a service to users of the web site. In providing an external link CESAS does not accept responsibility for or endorse the content or condition of any linked site.

If you suffer from, or think you suffer from, achondroplasia you should seek qualified medical advice. General information of help to patients is available from patient support groups.

Copyright

The copyright in materials on this site and in this web site as a whole is wholly owned by CESAS.

You may view this web site and its contents using your browser and save an electronic copy, or print out a copy, or parts of this web site solely for your own information, research or study, but only if you a) do not modify the copy from how it appears in the web site and b) include the copyright notice “CESAS – European Achondroplasia Forum” on a copy. You must not otherwise use the content in the whole or any part of this web site for any other purpose except as expressly permitted by statute or with CESAS’ prior consent.

Privacy Policy

Privacy Statement

CESAS are committed to protecting and respecting your privacy and personal information. This policy sets out the basis on which any personal data we collect from you, or that you provide to us, is used and kept secure by CESAS. Please read the following carefully to understand our views and practices regarding your personal data and how we will treat it. The policy applies whenever we collect your personal data, including when you use our website or other digital platforms.

Information we may collect from you

We may collect and process the following data about you: information that you provide by filling in forms on our site, including registering to use our site and subscribing to our service, if you contact us, we keep a record of that correspondence, details of transactions you carry out through our site, details of your visits to our site and the resources that you access.

Where we store your personal data

The data that we collect from you may be transferred to, and stored at, a destination outside the European Economic Area (“EEA”). It may also be processed by staff operating outside the EEA who work for us or for one of our suppliers. Such staff may be engaged in, among other things, the provision of support services. By submitting your personal data, you agree to this transfer, storing or processing. All personal information that you provide to us, is protected by us in accordance with the applicable data protection legislation and this privacy policy.

All information you provide to us is stored on our secure servers. Where we have given you (or where you have chosen) a password which enables you to access certain parts of our site, you are responsible for keeping this password confidential. We ask you not to share a password with anyone.

Unfortunately, the transmission of information via the internet is not completely secure. Although we will do our best to protect your personal data, we cannot guarantee the security of your data transmitted to our site; any transmission is at your own risk. Once we have received your information, we will use strict procedures and security features to try to prevent unauthorised access.

We use information held about you in the following ways:

To ensure that content from our site is presented in the most effective manner for you and for your computer
To provide you with information, products or services that you request from us or which we feel may interest you, where you have consented to be contacted for such purposes
To carry out our obligations arising from any contracts entered into between you and us
To allow you to participate in interactive features of our service, when you choose to do so
To notify you about changes to our service
To communicate with you, in the event that the services you have requested are unavailable
For record keeping purposes
To track your activity on our digital platforms

When you interact with our digital platforms we may also automatically collect the following information about your visit. This is to primarily help us better understand how our clients use our platforms and enable us to create better content and more relevant communications:

How you reached our digital platform
Your journey through our digital platform including which links you click on in our website, any searches you have made, how long you stay on each page and other page interaction information
Which videos you have watched and for how long

All personal information that we collect about you will be recorded, used, and protected by us in accordance with the applicable data protection legislation and this privacy policy. We may supplement the information that you provide with other information that we obtain from our dealings with you or which we receive from other organisations.

Disclosure of information

In order to provide our services to you we may need to appoint other organisations to carry out data processing on our behalf. These may include for example, payment processing, fraud prevention and screening.

We may share your data with third parties:
(a) if we are under a legal or regulatory duty to do so
(b) if it is necessary to do so to enforce our terms of use or other contractual rights,
(c) to lawfully assist the police or security services with prevention and detection of crime or terrorist activity
(d) where such disclosure is necessary to protect the safety or security of any persons and /or
(e) otherwise permitted under applicable law

Some of the organisations to which we may disclose your personal information are situated outside the United Kingdom and European Union, in countries which may not have laws the protect privacy as extensively as in the United Kingdom. If we do share your personal information with other territories we will take proper steps to ensure that your information is protected in accordance with this privacy policy.

We will not sell, share, or rent your personal information to any third party or use your e-mail address for unsolicited mail.

Use of Cookies

We may also collect information about your computer including where available your IP address, operating system and browser type, to assist us in analysing the profile of our visitors. This is statistical data about our visitors’ browsing actions and patterns and does not identify any individual. We may use cookies on our site in the following ways:

To help us recognise you as a unique visitor (in the form of a number) when you return to our site and allow us to tailor content or advertisements to match your preferred interests or to avoid showing you the same adverts repeatedly.
To compile anonymous, aggregated statistics that allow us to understand how users use our site to help us improve the structure of our website.

You have the ability to accept or decline cookies by modifying the settings in your browser.
This website uses cookies to better the users experience while visiting the website. Where applicable, this website uses a cookie control system allowing the user on their first visit to the website to allow or disallow the use of cookies on their computer / device. This complies with recent legislation requirements for websites to obtain explicit consent from users before leaving behind or reading files such as cookies on a user’s computer / device.

Cookies are small files saved to the user’s computer’s hard drive, that track, save and store information about the user’s interactions and usage of the website. This allows the website, through its server to provide the users with a tailored experience within this website.

Users are advised that if they wish to deny the use and saving of cookies from this website on to their computers hard drive, they should take the necessary steps within their web browsers security settings to block all cookies from this website and its external serving vendors. Users are advised, however, that by disabling the cookies for this website, they may not be able to use all the interactive features of our site. To find out more about cookies and how they can be disabled please visit the Interactive Advertising Bureau at www.allaboutcookies.org

This website uses tracking software to monitor its visitors to better understand how they use it. This software is provided by Google Analytics which uses cookies to track visitor usage. The software will save a cookie to your computer’s hard drive in order to track and monitor your engagement and usage of the website, but will not store, save or collect personal information.

You can read Google’s privacy policy here for further information

Other cookies may be stored to your computer’s hard drive by external vendors when this website uses referral programs, sponsored links or adverts. Such cookies are used for conversion and referral tracking and typically expire after 30 days, though some may take longer. No personal information is stored, saved or collected.

External Links

Our site may, from time to time, contain links to and from the websites of our partner networks, advertisers and affiliates. Users are advised to adapt a policy of caution before clicking any external web link mentioned throughout this website, (External links are clickable text / banner / image links to other websites).

The owners of the website cannot guarantee or verify the contents of any externally linked website despite their best efforts. Users should therefore note that they click on external links at their own risk, and this website and its owners cannot be held liable for any damages or implications caused by visiting any external links mentioned. Users are advised to check the policies of these external websites before submitting any personal data.

Contact & Communication

Users contacting this website and / or its owners, do so at their own discretion and provide any such personal details requested at their own risk. Your personal information is kept private and stored securely until a time it is no longer required or has no use, as detailed in the relevant data protection legislation. Every effort has been made to ensure a safe and secure form to email submission process, but users using such form to email processes are advised that they do so at their own risk.

This website and its owners use any information submitted, to provide you with further information about the products / services they offer or to assist you in answering any questions or queries you may have submitted. This includes, using your details to subscribe you to any email newsletter program the website operates but only if this was made clear to you and your express permission was granted when submitting any form to email process. Or, whereby you the consumer, have previously purchased from or enquired about purchasing from the company, a product or service that the email newsletter relates to. This is by no means an entire list of your user rights, in regard to receiving email marketing material. Your details are not passed on to any third parties.

If at any point you no longer wish to receive information from us, you may unsubscribe.

Social Media Platforms

Communication, engagement and actions taken through external social media platforms that this website and its owners participate on, are custom to the terms and conditions as well as the privacy policies held with each social media platform respectively.

Users are advised to use social media platforms wisely and communicate / engage upon them with due care and caution, in regard to their own privacy and personal details. This website nor its owners will ever ask for personal or sensitive information through social media platforms and encourage users wishing to discuss sensitive details to contact them through primary communication channels such as by telephone or email.

This website may use social sharing buttons which help share web content directly from web pages to the social media platform in question. Users are advised before using such social sharing buttons that they do so at their own discretion and note that the social media platform may track and save your request to share a web page respectively through your social media platform account.

Shortened Links in Social Media

This website and its owners through their social media platform accounts may share web links to relevant web pages. By default, some social media platforms shorten lengthy URLs

Users are advised to take caution and good judgement before clicking any shortened URLs published on social media platforms by this website and its owners. Despite the best efforts to ensure only genuine URLs are published, many social media platforms are prone to spam and hacking and therefore this website and its owners cannot be held liable for any damages or implications caused by visiting any shortened links.

Changes to our privacy policy

This privacy policy was updated in November 2021 in accordance with the General Data Protection Legislation 2018.

Edited and customized by: CESAS on behalf of The European Achondroplasia Forum

Changes to our privacy policy If you have any requests concerning your personal information or have any questions or comments about privacy, please get in touch

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