Privacy Statement
Dravet Syndrome Ireland is committed to protecting your privacy and the personal information you and others provide to us. This statement outlines what we do with the personal information you provide to us, why we gather it and what it means to you. If you are under 16 years of age, please read this statement with a parent or guardian and ensure you understand it. This statement outlines our approach to Data Protection to fulfil our obligations under the General Data Protection Regulation (GDPR).
Who we are
We are Dravet Syndrome Ireland, a Company Limited by Guarantee registered under company number 669279, with a registered address at Garrarus, Tramore, Waterford, Ireland, X91E3P2. We are a registered charity which supports families and works to improve outcomes for individuals with a diagnosis of Dravet Syndrome and other severe genetic epilepsies across Ireland. We process personal data and special category personal data about people to carry out this core work. We are also engaged in training, research, fundraising, direct marketing, office administration, and finance. We manage relationships with volunteers, contractors and authorities such as the HSE.
For the purpose of the GDPR, the data controller is Dravet Syndrome Ireland Company Limited by Guarantee (“Dravet Syndrome Ireland”).
What Personal Information do we collect from you
Dravet Syndrome Ireland processes personal data about service users and their carers/family members/representatives, prospective volunteers, donors, advocates, supporters, contractors, suppliers and individuals in sponsor companies or partner organisations. Dravet Syndrome Ireland does not engage in profiling or automated decision making. However, if you are a fundraiser, volunteer or donor of Dravet Syndrome Ireland, we may analyse the outcomes of our fundraising campaigns, your preferences and engagements with you to tell you about fundraising events, activities or volunteer opportunities that may be of specific interest to you. You can opt-out of your personal data being used for this type of analysis by contacting info@dravetsyndromeireland.org, or by contacting the DPO whose details are below.
Dravet Syndrome Ireland processes different types of personal data and special category personal data depending on how and why you are interacting with us. Please see below:
Engagement with our organisation as an individual or parent/carer of individual with an intractable epilepsy
Categories of data processed:
Health data (letter confirming diagnosis from consultant physician), contact names and initials, addresses, telephone numbers, email, date of birth, gender, IP addresses if attending virtual information sessions, social preferences, dietary needs, funding applications. Option to share photographs, videos and stories with online community.
Communications
Categories of data processed:
Contact names, addresses, telephone numbers, email, social media identifiers such as facebook®, twitter®, Instagram®, photographs, videos, stories and health data, completing forms on www.dravetsydromeireland.org (our site) such as the contact us form or when subscribing to receive our Newsletter.
Training & research
Categories of data processed:
Contact names, addresses, telephone numbers, email, assignments, training records, health data.
Office Administration & Finance Management
Categories of data processed:
Contact names, contact details, tax identifiers (e.g. VAT number for service providers), bank details, legal claims, timesheets and payment data, data associated with accounts receivable or accounts payable.
Direct Marketing & Fundraising
Categories of data processed:
Contact names, contact details, PPSN for donors, bank details, health data, photographs, stories, video or audio footage, donor, volunteer and supporter preferences and interests.
Donations
Categories of data processed:
Contact name and address; email address; credit/debit card details; PayPal details; bank account details/direct debit mandate form; age group; tax payer status and PPSN number (where you wish to avail of tax relief in respect of your donation)
Human Resources Recruitment
Categories of data processed:
Application form, references, CVs (employment history and education), Garda/Police vetting declarations, professional qualifications and other recruitment documents and if we conduct interviews using a virtual platform, then we will process your face image, voice recording and IP address.
Wellbeing, Safety & Security
Categories of data processed:
Occupational health data, accident & incident reports, safeguarding/ risk assessment information, location data and CCTV recordings.
Website management
Categories of data processed:
Google Analytics data including IP addresses (see cookie policy).
Where do we get this information from
We obtain personal data about you if:
you register to attend an event organised by Dravet Syndrome Ireland;
you apply to Dravet Syndrome Ireland’s family support grant
you or your parent/guardian/ carer contact us to request engagement with our organisation. If someone gives us information about you, we may add it to any personal information we already hold and use it in the ways described in this Notice. Before you disclose information to us about another person, you should be sure that you have their consent to do so. You should also show them this Notice. You need to ensure they confirm that they know you are sharing their personal information with us for the purposes described in this Data Protection Notice;
a health or social care professional shares data with us by way of a referral;
you contact us to become a volunteer, donor, course participant or advocate;
we complete a business transaction with you as a supplier of products / services, or as a customer of our shops.
We may have your personal data because your company or organisation has entered into a partnership with Dravet Syndrome Ireland. In limited circumstances data is publicly available and there would be a reasonable expectation that an organisation such as Dravet Syndrome Ireland would process it, for example, you are a journalist, medical expert, academic, politician, business leader or celebrity.
Why do we collect this information
We collect the information in order to provide you with our services, to market our services, to fundraise, to improve our organisation and to recruit staff and volunteers. We will use this information:
To carry out our obligations arising from any agreements entered into between you and us;
To ensure eligibility for services or supports
To communicate with you as part of our relationship with you or in accordance with our agreement with you;
To carry out fundraising and marketing activity which is vital to the financial sustainability of our organisation;
To set you or your company up as a supplier on our systems and to pay you for products/services provided to us;
To liaise with you about projects that we are undertaking with you;
To create a candidate profile for you if you are a job applicant;
To administer and improve our site and for internal operations, including troubleshooting, data analysis, testing, research, statistical and survey purposes;
As part of our efforts to keep our site safe and secure;
To deliver information about our services and our organisation, where you have subscribed to receive same;
The legal bases for the processing of your data are:
Processing necessary for the performance of a contract which you have entered into with us or to take steps at your request prior to entering into a contract;
Processing necessary for compliance with a legal obligation to which we are subject;
Processing necessary in order to protect the vital interests of you or of another natural person;
That you have provided consent for the processing for one or more specified purposes such as marketing, for example, when you subscribe to our newsletter or opt to receive information from us in respect of our organisation;
Processing necessary for the purposes of the legitimate interests which we pursue for example by providing you with quotes and proposals about our services prior to contract.
The legal basis for the processing of your Special Category Personal Data (i.e. your medical/health data) are:
The data subject has given explicit consent to the processing of those personal data for one or more specified purposes (except where this right is superseded by either EU or Member State law).
Specified purpose: we require confirmation of diagnosis of an intractable epilepsy for engagement with our organisation in order to safeguard all individuals, parents and families engaged with our organisation.
That the processing is necessary in order to protect your vital interests or that of another person where you are physically or legally incapable of giving consent
Who do we share this information with
We may share your personal data and where necessary, Special Categories of Personal Data, with selected third parties as listed below* including suppliers and contractors in order to provide you with our services. For example, these suppliers may include our web hosting provider and our IT service providers.
In addition, we may disclose your personal information (including Special Categories of Personal Data) to third parties:
If we are under a duty to disclose or share your information in order to comply with any legal obligation, or in order to enforce or apply our terms of use and other agreements; or to protect our rights, property, or safety, our clients/customers, or others. This includes exchanging information with other companies and organisations for the purposes of fraud protection and credit risk reduction;
Where solicitors or your elected power of attorney have your written authorisation to be provided with the personal data we hold about you
When you are under age of eighteen, we will share your personal data with your legal guardians.
*we reserve the right to update the list as the need arises.
TUSLA/HSE safeguarding
Service provided: Legal obligation to disclose certain information
G Suite
Service provided: Cloud service providers
Zoom
Service provided: Web-based video consultation platform
Law firms
Service provided: Legal services
AIB
Service provided: Banking services
Revenue Commissioners
Service provided: Legal obligation to disclose certain information
An Gardaí Siochána
Service provided: Law enforcement
Miscellaneous photographers, venues corporate partners, trade unions, professional bodies
Service provided: For operational purposes in connection with fundraising events, payment of subscription fees.
How long do we keep your Information
Dravet Syndrome Ireland in accordance with our obligations, keeps personal data and special category personal data for a range of periods. Our current retention periods are based on:
Statutory obligations;
Contractual obligations, for example, we are required to keep records for a certain period as provided for in contracts with service providers like IT service providers;
Quality assurance / best practice obligations set by state entities or regulatory bodies.
Our view that retention is necessary for the original purpose or a compatible purpose
On a case by case basis, records may be retained for longer where they are required for actual or potential legal actions or the management or mitigation of operational or strategic risks to Dravet Syndrome Ireland. Where records are subject to this kind of review the ongoing retention will be assessed annually.
Do we Transfer your information outside the European Union or European Economic Area
Your information is stored on secure systems and with providers of secure information storage. We may transfer or allow the transfer of information about you and your services with us to our service providers located outside the European Economic Area (EEA), but only if they agree to act solely on our instructions and protect your information to the same standard that applies in the EEA.
What are your Rights
You have the following rights:
The right to access the personal data we hold about you. Under the GDPR, we are obliged to respond to your access request without undue delay. In most instances, we will respond within 30 Days. If we are unable to deal with your request fully within 30 Days (due to the complexity or number of requests), we may extend this period by a further two calendar months. Should this be necessary, we will explain the reasons why. If you make your request electronically, we will, where possible, provide the relevant information electronically unless you ask us otherwise. Please contact the Data Protection Officer to make a request. We reserve the right not to have to respond to access requests that are excessive or manifestly unfound.
The right to require us to rectify any inaccurate personal data about you without undue delay.
The right to have us erase any personal data we hold about you in circumstances such as where it is no longer necessary for us to hold the personal data or, in some circumstances, if you have withdrawn your consent to the processing.
The right to object to us processing personal data about you such as processing for profiting or direct marketing.
The right to ask us to provide your personal data to you in a portable format or, where technically feasible, for us to port that personal data to another provider provided it does not result in a disclosure of personal data relating to other people.
The right to request a restriction of the processing of your personal data.
Where our processing of your personal data is based on your consent to that processing, you have the right to withdraw that consent at any time but any processing that we have carried out before you withdrew your consent remains lawful.
You may lodge a complaint with your local supervisory authority with respect to our processing of your personal data. The local Supervisory Authority in Ireland is the Data Protection Commissioner. The website is www.dataprotection.ie. A form called “raise a concern” is available on their website in this regard.
You may exercise any of the above rights by contacting the DPO of Dravet Syndrome Ireland at info@dravet.ie or writing to Data Protection Officer, Dravet Syndrome Ireland, Knockagurran, Straide, Foxford, Co. Mayo, F26P266.
Implications of not providing personal data
Sharing personal Information with us is in both your interest and ours. We need information in order to:
Provide our services.
Manage our business for our legitimate interests.
Comply with our legal obligations.
You can choose not to share information, but by doing so may limit the services we are able to provide to you because:
We may not be able to assess your suitability for a service, or, where relevant, give you a recommendation to provide you with a service, renew an existing service or continue to provide services to you if we do not have the ability to process your information.
How to contact our DPO
If you have any questions about how your personal data is gathered, stored, shared or used, or if you wish to exercise any of your data rights, please contact our Data Protection Officer:
By phone: 0834458604
By postal Address: Data Protection Officer, Dravet Syndrome Ireland, Knockagurran, Straide, Foxford, Co. Mayo, F26P266.
Cookie Policy
What are cookies?
This website uses cookies. Cookies are small files that a site or its service provider transfers to your computers hard drive through your Web browser (if you allow) that enables the sites or service providers’ systems to recognize your browser and capture and remember certain information. Further information on cookies can be found at http://ec.europa.eu/ipg/basics/legal/cookies/index_en.htm
How do we use cookies?
We use cookies to compile anonymous data about site traffic and site interaction so that we can offer better site experiences and tools in the future. The Dravet Syndrome Ireland website uses Google Analytics to gather anonymous statistics about visitors to the site and which pages are visited. If you prefer, you can choose to have your computer warn you each time a cookie is being sent, or you can choose to turn off all cookies via your browser settings. Like most websites, if you turn your cookies off, some of our services may not function properly.
Managing cookies
Cookies help us to ensure that our website is as good as it can be for our users. Cookies pose little threat to your privacy, but some people may want to turn them off anyway.