Data protection
& Privacy Policy

Data protection and privacy

Privacy statement and cookies

FESCA is committed to protecting your privacy, and this statement describes how we collect and use information about people who visit our website. The terms of this statement may change, so please check it from time to time. Our privacy policy seeks compliance with the Data Protection Act 1998 and the General Data Protection Regulation (EU) 2016/679 (“GDPR”).

If you have any questions about this statement, please contact us via email

Who we are
Federation of European Scleroderma Associations aisbl (FESCA) is an International Non-Profit Association registered in Belgium with Registration No. FOJ 15454.

Our website address is:

How do we collect information?
We obtain personal information from you when you enquire about our activities, register with us, sign-up to our communications, make a donation to us, attend our fundraising or charity events, ask a question about Scleroderma or Systemic Sclerosis or otherwise provide us with personal information via this website.

What personal data do we collect?
The personal information we collect might include your name, email address, postal address and telephone number and credit/debit card details. We may also collect sensitive personal information for the purpose of supporting you, for example, health information if you tell us about your condition or the condition of a friend or relative. We ensure that all data that is collected, stored and used is in accordance to a lawful basis under the GDPR.

We also gather general non-personal information about the use of this website, such as which pages users visit most often. We may also track which pages users visit when they click on links in FESCA emails. We may use this information to personalise the way our websites are presented when users visit them, to make improvements to our websites and to ensure we provide the best service for users. Wherever possible we use aggregated or anonymous information, which does not identify individual visitors to our websites.

Contact forms
From our contact forms we keep the data you submit for a period of no longer than 12 months for customer service purposes. We do not use the information submitted through the contact forms for marketing purposes in any way.

Links and embedded content from other websites
Our website may include links to websites run by other organisations. FESCA is not responsible for the privacy practices of these other websites so you should read their privacy policies carefully.

Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.

We use cookies to enhance the online experience of our visitors and to better understand how our sites are used. Cookies may tell us, for example, whether you have visited our site before or whether you are a new visitor.

Your rights
You have the right to choose whether to accept these cookies. You can exercise this right by amending or setting the controls on your browser to reflect your cookie preferences. The “Help” menu in the toolbar of most web browsers will tell you how to change your browser’s cookie settings, including how to have the browser notify you when you receive a new cookie, and how to disable cookies altogether.

However, please note that if you choose to refuse cookies you may not be able to use the full functionality of this website.

We use cookies from third-party partners such as Google for analytic purposes. Using Google Analytics allows us to learn about the use of this website, such as which pages users visit most often.

Why do we collect data about you?
We collect personal information

  • to provide you with the services, products or information you have requested;
  • to further our charitable aims, including for fundraising activities;
  • for administration purposes.

As part of this, we may analyse the personal information we collect to create a profile of your interests and preferences so that we can contact you in the most appropriate way and with the most relevant information. Where relevant, we may also assess your personal information for the purposes of fraud and credit risk reduction.

Do we share your data?
We may need to share your information with our service providers for the purposes described above, from time to time, however it would only be done out of necessity and based on a genuine purpose, which would be recorded on our systems.

We may also need to disclose your information if required by law (for example to government bodies and law enforcement agencies) or if we have your permission to do so.

We will not sell any of your personal information or disclose to any parties who do not improve service provision.

If you wish to obtain information on who we share your information with or would like to amend your preferences, please contact us.

Your consent
By providing us with your personal information, including sensitive information such as on your health, you consent to the collection and use of this in accordance with the purposes described in this Privacy statement.

You have the right to ask for a copy of the information we hold about you and to have any inaccuracies in your information corrected or to erase the data that we have stored about you.

FESCA provides you with this information as requested without a charge unless the request is manifestly unfounded or excessive. We aim to respond to your request as soon as possible, latest within a month of your request. If you wish to exercise these rights, contact FESCA, Federation of European Scleroderma Associations aisbl, 20/32 Avenue des Etats Unis, 7500 Tournai, Belgium or email

If your personal details change, please help us to keep your information up to date by notifying us.

We may change the terms of this privacy statement from time to time. If we do so, we will post the changes here so please check from time to time. By continuing to use our websites you will be deemed to have accepted such changes.

about FESCA

FESCA - a umbrella organisationFESCA, Federation of European Scleroderma Associations aisbl, acts at a pan-European level to promote and achieve its objectives in alignment with the aims of the national groups it represents. As an umbrella group, FESCA supports its member organisations, while the support of individual sufferers of scleroderma remains the sole remit of national organisations.

FESCA’s objectives include encouraging the active involvement of politicians and pharmaceutical companies, working with doctors to secure earlier diagnosis and better treatments, and creating greater awareness of scleroderma so that those who suffer from it can access proper, equitable care.

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