Last Updated: April 04, 2024

The Ehlers-Danlos Society
Privacy Policy

Introduction 

We are The Ehlers-Danlos Society (“Ehlers Danlos”, “us”, “we”, “our”, “The Society”). We are an international nonprofit organization, dedicated to patient support, scientific research, advocacy, and increasing awareness for the Ehlers–Danlos syndromes and hypermobility spectrum disorder. We are registered in England and Wales under registration number 10722868, and we have our registered office at Wayman House 141 Wickham Road, Shirley, Croydon, Surrey, England, CR0 8TE. We are registered with the UK supervisory authority, Information Commissioner’s Office (“ICO”) in relation to our processing of Personal Data under registration number ZB343307.

Unless we notify you otherwise, we are the controller of the Personal Data we process about you. This means that we decide what Personal Data to collect and how to process it.

We provide our support and services to individuals located in countries all over the world, and we are therefore committed to ensuring we meet our legal obligations when processing personal data under the data protection laws of these countries, which include but are not limited to:

• the UK General Data Protection Regulation and the EU General Data Protection Regulation 2016/679 (together referred to herein as the “GDPR”);
• the UK Data Protection Act 2018 (“DPA 2018”)
• the California Consumer Privacy Act (“CCPA”);
• the Canadian Personal Information Protection and Electronic Documents Act (“PIPEDA”);
• the Colorado Privacy Act (“CPA”);
• the Connecticut Data Privacy Act (“CTDPA”);
• the Utah Consumer Privacy Act (“UCPA”);
• the Virginia Consumer Data Protection Act (“VCDPA”).

The purpose of this privacy notice is to explain what Personal Data we collect about you and how we process it. This privacy notice also explains your rights, so please read it carefully. If you have any questions, you can contact us using the information provided below under the ‘How to Contact Us’ section.

Who This Privacy Notice Applies To 

This privacy notice applies to you if:

• You visit our website;
• You join our global registry and repository;
• You register to participate in one of our research programmes;
• You undergo assessment to determine suitability for future fund-raising opportunities;
• You make a donation to The Ehlers-Danlos Society;
• You engage in fundraising for The Ehlers-Danlos Society;
• You become an advocate of The Ehlers-Danlos Society;

You sign up to receive newsletters and/or other communications from us.

What Is Personal Data 

‘Personal Data’ means any information from which someone can be identified either directly or indirectly. For example, you can be identified by your name or an online identifier.

‘Special Category Personal Data’ is more sensitive Personal Data and includes information revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership, genetic data, biometric data for the purposes of uniquely identifying someone, data concerning physical or mental health or data concerning someone’s sex life or sexual orientation.

How We Collect Your Information 

We collect most of the Personal Data directly from you in person, by telephone, text or email and/or via our website.

However, where applicable, we may also collect your Personal Data from third parties such as:

• others to whom you have provided consent;
• publicly available sources such as social media and/or prospect research platforms.

Personal Data We Collect 

The type of Personal Data we collect about you will depend on our relationship with you. For the type of Personal Data we collect, see the table below in the section entitled ‘Purposes and Lawful Basis’.

Purposes and Lawful Basis 

We will only use your Personal Data when the law allows. Most commonly, we will use your Personal Data in the following circumstances:

* Where we use publicly available information to assess your inclination to provide financial support, and any areas of philanthropic interest, this research may include financial information (including assessment of income and whether particular donations or funding appeals may be of interest), philanthropy and other giving (including donations to other organisations), other support (for example, details of volunteering roles), career highlights and other life achievements, and information about areas of interest and extra-curricular activities.

Sharing Your Personal Data 

We may also disclose your information to third parties in connection with other purposes set out in this policy. These third parties may include:

• business partners, suppliers and sub-contractors who may process information on our behalf;
• external researchers when explicit consent is given by the participant (regarding the Global Registry);
• researchers, any joint funders of research, host institutions, and external members of our committee;
• advertisers, social media platforms, and advertising networks;
• analytics and search engine providers;
• IT service providers.

Where we are under a legal or regulatory duty to do so, we may disclose your details to the police, regulatory bodies or legal advisors, and/or, where we consider necessary to protect the rights, property or safety of The Ehlers-Danlos Society, its personnel, users or others.

International Transfers 

Your Personal Data may be processed outside of the EU or UK. This is because the organizations we use to provide our service to you may be based outside the EU or UK.

We have taken appropriate steps to ensure that the Personal Data processed outside the EU or UK has an essentially equivalent level of protection to that guaranteed in the EU or UK. We do this by ensuring that:

• Your Personal Data is only processed in a country which the Secretary of State has confirmed has an adequate level of protection (an adequacy regulation);
• We enter into an International Data Transfer Agreement (“IDTA”) with the receiving organization and adopt supplementary measures, where necessary. (A copy of the IDTA can be found here international-data-transfer-agreement.pdf (ico.org.uk)) or;
• We enter into Standard Contractual Clauses (“SCCs”) with the receiving organizations and adopt supplementary measures, where necessary. (A copy of the SCCs can be found here Standard Contractual Clauses (SCCs)).

How Long We Keep Your Data 

We will retain your personal data for as long as is necessary to provide you with our services and for a reasonable period thereafter to enable us to meet our contractual and legal obligations and to deal with complaints and claims.

At the end of the retention period, your personal data will be securely deleted or anonymized, for example by aggregation with other data, so that it can be used in a non-identifiable way for statistical analysis and business planning.

We Respect Your Confidentiality 

The Ehlers-Danlos Society requires that your personal information be held in strict confidence. We use your information only for its intended Society purposes. We do not sell or trade your information to other organizations or individuals.

We Protect Your Information 

The Ehlers-Danlos Society takes every possible measure to ensure that your information is not compromised in any way. We implement appropriate technical and organizational measures to protect data that we process from unauthorized disclosure, use, alteration or destruction.  Our privacy promise is in place in respect of our website only. Other online services will be serviced by their own privacy policies.

Some of the controls we have in place are:

• We ensure active SSL certification on all of our websites (using https:// rather than http://);
• We use technology controls for our information systems, such as firewalls, user verification, data encryption, and separation of roles, systems & data management;
• We use password encryption and password management tools;
• We enforce a “need to know” policy, for access to any data or systems.

In addition to the technical and organizational measures we have put in place, there are a number of simple things you can do to in order to further protect your personal information;

1. Never share a One Time Passcode (OTP).
2. Never enter your details after clicking on a link in an email or text message.
3. Always send confidential information by encrypted email where possible this reduces the risk of interception.
4. If you are logged into any online service do not leave your computer unattended.
5. Close your internet browser once you have logged off.
6. Never download software or let anyone log on to your computer or devices remotely, during or after a cold call.

Secure Online Services 

You can easily identify secure websites by looking at the address in the top of your browser which will begin https:// rather than http://.

What Are Your Data Protection Rights?  

The Ehlers-Danlos Society would like to make sure you are fully aware of your rights. We will always ensure, no matter where you are located in the world, that we adhere to and fully respect your data protection rights. If you wish to exercise your data protection rights, please email [email protected].

If you are located in the EU or UK, you have the following rights:

• The right to access You have the right to request from The Ehlers-Danlos Society copies of your personal data and information about our processing of it.
• The right to rectification You have the right to request that The Ehlers-Danlos Society correct any information you believe to be inaccurate. You also have the right to request The Society to complete information you believe is incomplete.
• The right to withdraw You have the right to withdraw your consent at any time when The Ehlers-Danlos Society are relying on consent as the lawful basis for processing your personal data.
• The right to erasure You have the right to request that The Ehlers-Danlos Society erase your personal data, under certain conditions. Some data that is being used under certain conditions may not be able to be deleted, such as research data, however in these instances we will ensure all data being used is de-identified and cannot be linked with you.
• The right to restrict processing You have the right to request that The Ehlers-Danlos Society restrict the processing of your personal data, under certain conditions.
• The right to object to processing You have the right to object to The Ehlers-Danlos Society processing of your personal data, under certain conditions. If you object to us using your Personal Data for marketing purposes, we will stop sending you marketing material.
• The right to data portability You have the right to request that The Ehlers-Danlos Society transfer the data that we have collected to another organization, or directly to you, under certain conditions. If you make a request, we have one month to respond to you. If you would like to exercise any of these rights, please contact us.

We do not make significant decisions based solely on automated processing.

You will not have to pay a fee to access your personal data (or to exercise any of the other rights). However, we may charge a reasonable fee if your request for access is clearly unfounded or excessive. Alternatively, we may refuse to comply with the request in such circumstances.

If you wish to exercise your rights, please contact us at [email protected].

You can also lodge a complaint with your relevant data protection supervisory authority.

If you are located in the US, although The Ehlers-Danlos Society is not currently subject to any state privacy laws, we will always ensure that no matter where you are located, we adhere to and fully respect your data protection rights.

You can find the enacted US state privacy laws listed below:

California Consumer Privacy Act (as amended by the California Privacy Rights Act)
Colorado Privacy Act
The Connecticut Data Privacy Act
Utah Consumer Privacy Act
Virginia Consumer Data Protection Act

Privacy Policies of Other Websites  

The Ehlers-Danlos Society website contains links to other websites. Our privacy policy applies only to our website, so if you click on a link to another website, you should read their privacy policy.

Children’s Privacy 

The Ehlers-Danlos Society is committed to complying with the ICO’s Childrens Code (UK), the Children’s Online Privacy Protection Act (COPPA) and to protecting the online privacy of children under the age of 13. however we do not knowingly collect Personal Data of children without parental consent, unless permitted by law. If you are a child under the age of 13, you must have your parent’s permission to use our services. If you learn that a child has provided us with their Personal Data without parental consent, you may contact us, as described below, and if appropriate, we will securely and permanently delete it, in accordance with applicable law.

How to Contact Us and Our Data Protection Officer 

If you have any questions about The Ehlers-Danlos Society Privacy Policy, the data we hold about you, or you would like to exercise one of your data protection rights, please do not hesitate to contact us.

Email us at: [email protected]

Call us: +1 410-670-7577 or +44 (0) 203 887 6132.

Or write to us at: The Ehlers-Danlos Society Headquarters, 447 Broadway, 2^nd FL #670, New York, NY 10013, USA or The Ehlers-Danlos Society Europe Office, Office 7, 35-37 Ludgate Hill, London, EC4M 7JN, United Kingdom.

We have also appointed a Data protection Officer (“DPO”). Our DPO is Evalian Limited and can be contacted as follows:

Using the above Society email or postal addresses, please send you’re your communication clearly indicating ‘FAO the ‘Data Protection Officer’, your message will be passed directly to Evalian Limited for attention.

Our EU Representative  

We are based outside the EU and under the EU GDPR, we are required to appoint an EU representative.  The purpose of an EU representative is to make it easy for people in the EU to contact us should they wish to exercise their rights or make a complaint or enquiry in relation to how we are processing their Personal Data. It is also a contact point for the supervisory authorities located in the EU.

Our EU representative is DataRep who can be contacted as follows:

• Sending an email to DataRep at [email protected] quoting ‘The Ehlers-Danlos Society’ in the subject line
• Sending an online webform at datarep.com/data-request
• Mailing your inquiry to DataRep at the most convenient of the addresses in the table below. Please note when mailing inquiries, it is ESSENTIAL that you mark your letters for ‘DataRep’ and not The Ehlers-Danlos Society or your inquiry may not reach its destination.

DataRep Postal Address List: 

How To Complain 

You have the right to lodge a complaint with the relevant supervisory authority if you are concerned about the way in which we are handling your Personal Data. The supervisory authority in the UK is the Information Commissioner’s Office who can be contacted online at: Contact us | ICO, or by telephone on 0303 123 1113

For supervisory authorities in other countries within the EU see the link below:

https://edpb.europa.eu/about-edpb/about-edpb/members_en

Policy Review and Amendments 

We may update this notice (and any supplemental privacy notice), from time to time as shown below. We will notify of the changes where required by applicable law to do so.

Last Modified: April 4, 2024