The Multiple Sclerosis Society of Ireland ("MS Ireland") is a charity, registered in Ireland as CHY05365, with its head office at 80 Northumberland Road, Dublin, Ireland, email: email@example.com.
You should know what information we collect and how we use it.
The objectives for which MS Ireland exists are:
· to facilitate people with MS to control their lives and environment, to live with dignity and participate in the community,
· to provide support for the families and carers of people with MS,
· to co-operate with the medical, scientific, social and caring professions to promote scientific research into the cause of, cure for and management of MS, and the alleviation of medical and social symptoms,
· to exchange and disseminate information relating to MS, and
· to provide an identifiable focal point by developing an efficient, effective and caring organisation to serve the needs of people with MS.
MS IRELAND is committed to protecting the privacy of people who use our services, employment candidates and current employees, contacts, fundraisers, business partners, and other third parties we deal with, such as family members.
This Privacy Statement details how MS IRELAND collects, uses, discloses, transfers and stores your personal information. It applies to personal data about you that we collect, use and otherwise process in connection with your relationship with MS IRELAND.
MS IRELAND is a nationwide charity that operates from its headquarters in Northumberland Road in Dublin, the MS Care Centre at 65 Bushy Park Road, Rathgar, Dublin 6, and through employed regional workers and offices. MS IRELAND also has a network of Voluntary Branches, each of which processes personal data submitted to it directly and/or through a client's consent when he or she has ticked the "I would like my details sent to the nearest Voluntary Branch" on MS IRELAND's Lifetime Membership Form or the MS Care Centre Contract of Care. Any personal information processed by MS IRELAND in connection with this Privacy Statement is ultimately controlled by a MS IRELAND as the "data controller" as provided for under the General Data Protection Regulation ("GDPR"), the Irish Data Protection Acts, 1988 to 2018, and the Data Protection Commission (DPC) Guideline for the Charity and Voluntary Sector.
The elected Secretary of each Voluntary Branch is the controller of the personal data processed in that branch.
You may request information about the personal data that MS IRELAND holds about you by emailing us at firstname.lastname@example.org or writing to us at 80 Northumberland Road, Dublin, Ireland.
Please note that throughout this Privacy Notice the word "website" refers to https://www.ms-society.ie.
1. INFORMATION COLLECTED BY USING MS IRELAND WEBSITE
1.1 You are not required to provide any personal information to access public areas of MS IRELAND's website.
1.2 However, when you visit the MS IRELAND website we record your IP address and details of your visit, including the date and time. An IP address is an assigned number, similar to a telephone number, which allows your computer to communicate over the internet. In addition to your IP address the following technical information will also be collected: your login information, browser type and version, time zone setting, browser plug-in types and versions, operating system and platform, information about your visit including the full Uniform Resource Locators (URL), clickstream to, through and from the website (including date and time), pages viewed, download errors, page interaction information (such as scrolling clicks) and methods used to browse away from the website.
1.3 MS IRELAND uses this IP information for its legitimate interests to compile statistical data on the use of our website and to track how users navigate through our website in order to enable us to evaluate and improve.
1.4 Personal information such as names, addresses, email addresses, telephone numbers, and other personal data relating to services that we are providing to you will only be collected from users of the website who voluntarily input such information.
1.5 Focus Limited website designer in Bristol, England, acts as a data processor for MS Ireland in relation to the MS IRELAND website. In this capacity, Focus has sight of data regarding: donations, staff, the personal information of clients (including names, addresses, email addresses), enquiries and memberships.
2. CONTACT SALESFORCE DATABASE
2.1 We may retain information you have provided us with in MS IRELAND's contact database. Information that we typically hold in our database includes:
2.1.1 your contact information, including your name; job title; organisation's name; address; phone number(s), email address(es) and other identification information;
2.1.2 the area(s) that you have an interest in,
2.1.3 historical fundraising activity for MS IRELAND.
2.2 Once your details are included in MS IRELAND's contact database we may also record details of any:
2.2.1 MS IRELAND's mailing lists you have subscribed to or unsubscribed from;
2.2.2 mailings (including services updates and event invitations) we have sent you;
2.2.3 hyperlinks you have clicked in any mailing that we have sent you;
2.2.4 meetings we have held with you;
2.2.5 event invitations you have replied to; and
2.2.6 events you have attended.
2.2.7 your care records.
2.3 From time to time we may ask you by email to review your contact details and preferences, and update them as necessary. This not only helps us to keep the contact information we hold about you up-to-date, it also ensures that we only send you information that you have requested and/or is relevant to you.
3. INTERACTIONS WITH MS IRELAND
We retain personal information relating to interactions between MS IRELAND and people who use our services, clients, job applicants and current employees, contacts and business partners, including information relating to the services that we provide. We only retain information that is necessary for the purposes set out in this Privacy Statement.
4. PROCESSING OF YOUR PERSONAL INFORMATION
4.1 MS IRELAND, in the MS Care Centre, the regional offices, and throughout its network of Volunteer Branches, will only collect and process personal information where it has a legal basis for doing so. This includes where MS IRELAND is providing a service to you or fulfilling a Care Centre or Regional Office contract with you, where MS IRELAND has to comply with a legal duty, where you consent to the collection and use, where MS IRELAND has a legitimate interest in collecting and processing the personal information, or where the processing is necessary in the public interest. When personal information is processed, the basis of processing will be in accordance with relevant Irish and EU data privacy laws, our legal obligations and to meet our information security requirements.
4.2 MS IRELAND uses personal information which we have collected from you in order to:
4.2.1 provide you with a more tailored and effective service and/or care;
4.2.2 perform analysis aimed at improving our products, services and technologies for people with MS;
4.2.3 communicate with you through certain mandatory service communications such as welcome letters, appointment reminders and our terms and conditions;
4.2.4 communicate with you in connection with any services that we are providing to you and otherwise perform the services for you that you have engaged us to provide;
4.2.5 ensure compliance with regulatory requirements and applicable law;
4.2.6 provide updates and newsletters, including our MS News magazine by mail and our electronic newsletter, and invitations to events and meetings;
4.2.7 carry out administrative purposes (including within the MS IRELAND regional offices and the network of Voluntary Branches), which may include, for example, accounting and billing, auditing and identification checking;
4.2.8 undertake systems testing, maintenance and development in order to ensure network and information security;
4.2.9 to let you know ways you can get involved in our fundraising and campaigns;
4.2.10 when you are making a donation, registering for a campaign or event, as appropriate, you may be asked to provide personal details such as name, email address, postal address, phone number or payment information as needed;
4.2.11 prevent fraud; and
4.2.12 market our services and products to you where MS IRELAND has a legitimate interest or you have consented to us doing so and in accordance with your preferences.
4.3 MS IRELAND will only collect, use and otherwise process information revealing racial or ethnic origin, political opinions, religious beliefs or relating to your health or sexual orientation or otherwise which is treated by applicable data protection laws as a "sensitive" or "special" category of personal information, where and only to the extent that you have given your explicit consent unless we are otherwise permitted or required to collect, use and process such information under applicable data protection laws, including but not limited to where this is necessary in connection with providing our agreed services to you.
4.4 Any data collection that is optional will be made clear to you. However MS IRELAND may need to collect and process personal information for certain legal compliance purposes or in order to perform certain services for you, including compliance with legal requirements relating to our anti-fraud, anti-money laundering or 'know your customer' obligations. If you choose not to give us this personal information then it may delay or prevent MS IRELAND from meeting MS IRELAND's obligations or it may mean that MS IRELAND cannot perform certain services for you. MS IRELAND will advise you if this is the case.
5. MARKETING and INFORMATION COMMUNICATIONS by MS IRELAND
5.1 We may wish to use the personal information that we collect about you to provide you with relevant marketing communications. This may include sending tailored direct marketing and information e-mails and other communications relating to our services or those of our MS IRELAND regional offices or Voluntary Braches, and sending you invitations to seminars and other events related to the care of yourself or your family member.
5.2 We shall only send such marketing communications to you to the extent that doing so is in the legitimate business interests of MS IRELAND or where you have consented to us doing so. As set out in the Data Subjects Rights table below, you may withdraw that consent at any time by contacting us at email@example.com. In addition, each electronic communication that you receive shall have a very clear "unsubscribe" option, which will allow you to stop receiving similar communications in the future.
6. EXCHANGE OF INFORMATION
6.1 MS IRELAND shares data between our regional offices and our Voluntary Branches, where necessary, for the purposes outlined in this Privacy Statement. MS IRELAND ensures that your personal information is shared in accordance with applicable data protection laws, at all times providing protection to your personal information and your rights.
7.1 MS IRELAND has relationships with third parties in order to provide services for people with MS, such as medical professionals. In some instances we may disclose your personal information to third parties where this is necessary to perform the services for which you have engaged MS IRELAND or otherwise in furtherance of an outsourcing or other data processing arrangement. In those circumstances MS IRELAND will ensure that the third party is contractually bound to only process personal information in accordance with applicable data protection laws and with MS IRELAND's specific instructions and requirements, and at all times in a manner that protects your rights under applicable data protection laws. Our suppliers and service providers will be required to meet our standards on processing information and security. The information we provide them, including your information, will only be provided in connection with the performance of their function. They will not be permitted to use your information for any purposes other than those outlined in this Privacy Statement.
7.2 In relation to any other third parties, MS IRELAND will only disclose or transfer your information where you have given your consent or where we are required to do so by law or other regulatory code or practice.
7. TRANSFER OF INFORMATION ABROAD
8.1 In very rare circumstances, personal data may be transferred to or accessed from countries whose laws provide a level of protection for personal data, not always equivalent to the level of protection that may be provided in your own country. In particular if you are located inside the European Economic Area ("EEA") your personal information may be transferred to a country outside of the EEA.
8.2 MS IRELAND ensures that cross border transfers comply with all relevant laws and regulations and in addition, we enforce the highest privacy and data management standards across all our offices through MS IRELAND Data Protection Policy. A copy of that policy may be obtained by contacting MS IRELAND at firstname.lastname@example.org.
8.3.1 you have expressly consented to the transfer of personal information;
8.3.2 the transfer is necessary for the performance of the services for which MS IRELAND has been engaged or the conclusion or performance of a contract concluded in your interests; or
8.3.3 the transfer is otherwise permitted by applicable data protection laws,
MS IRELAND will only transfer your personal information to a country that is deemed to have an adequate level of protection under the applicable data protection law or otherwise where MS IRELAND has put in place adequate safeguards to protect the personal information. In particular where MS IRELAND sends your personal information outside of the EEA, MS IRELAND shall only do so where the recipient of the information is subject to:
8.3.4 binding corporate rules;
8.3.5 standard data protection clauses approved under applicable law;
8.3.6 an approved code of conduct; or
8.3.7 an approved certification mechanism.
8.4 Further details on the safeguards adopted by MS IRELAND may be obtained by contacting MS IRELAND at email@example.com.
8. DATA RETENTION
MS IRELAND shall only retain your personal information for so long as there is a reasonable need to retain the information for the purposes set out in this Privacy Statement. Further details on MS IRELAND's policy in relation to retention periods can be found in our Record Retention Policy. A copy of that policy may be obtained by contacting MS IRELAND at firstname.lastname@example.org.
The MS Care Centre is registered as a provider by the Health Information and Quality Authority (HIQA) and complies with HIQA's Information Management Standards for National Health and Social Care Data Collections.
9. PROTECTION OF YOUR PERSONAL DATA
MS IRELAND is committed to protecting the security of your personal information. We use a variety of security technologies and procedures to help protect your personal information from unauthorized access, use, or disclosure, across all of our computer systems, networks, website, mobile phones, regional offices and Voluntary Branches.
Data Subject Rights
You have rights in respect of the personal data that we collect and process concerning you.
You are entitled to details concerning the processing of your personal data. This includes details of the data being processed, the purposes of the processing, any recipients of your data, the period for which the information is processed, the source of the information, any international transfers of the information and how we protect it. You may also request details of any automated decision making, including profiling, of your personal data.
You are entitled to a copy of the personal data we process about you.
You are entitled to have any incomplete and inaccurate personal information held by us corrected on request.
Right to be Forgotten
In some cases, you may request to have your personal data erased where the data is no longer necessary for the purposes for which it was collected and/or processed or you withdraw consent to our use of it.
We may advise that we must continue processing your data if there are grounds other than your consent for processing your data, where processing is in compliance with a legal obligation, for reasons of public interest or for the exercise or defense of legal claims.
You can ask us to restrict the processing of data MS IRELAND holds about you if you dispute the accuracy of the data we process about you or if you have objected to the grounds upon which we process the information.
Where you have asked us to restrict processing the information we shall only hold, process and erase the information as permitted by you or as permitted by the Data Protection Acts, 1988 to 2018 or the GDPR. We will advise you if we do not agree with your request.
Where processing of your data is carried out by automatic means, you are entitled to receive a copy of that information in a machine-readable format and for that to be provided to another data controller, where technically possible.
You may object to MS IRELAND collecting, using and otherwise processing your personal data where the basis for the processing is MS IRELAND's legitimate interests or the processing is in the public interest. In such circumstances we shall cease processing your personal information unless we are legitimately processing the information on a different basis, there are compelling legitimate grounds for continuing to process the personal information, or we are otherwise permitted to under applicable data protection laws, which MS IRELAND will so advise.
Where you have given us consent to process your personal data for any of the purposes outlined in this Privacy Statement and we have no other legal basis for processing, you shall be entitled to withdraw that consent.
Right to Complain
If you have concerns or complaints regarding this Privacy Statement or the manner in which MS IRELAND collects, uses and otherwise processes your personal data we would like to hear from you.
If you consider that we have not processed your data according to these rights and we have not addressed your complaint in this regard, you are entitled to lodge a complaint in Ireland to the Data Protection Commission at www.dataprotection.ie.
This Privacy Statement may be updated from time to time.
The current version of this Privacy Statement can be found on the MS IRELAND website or may otherwise be requested at email@example.com.
If you have any questions in relation to this Privacy Statement please contact us at firstname.lastname@example.org.
Have you joined the Kiss Goodbye to MS squad? This week Grace Kavanagh tells us why she joins in with thousands of others for the massive global campaign. It’s all about the Kiss! MS is a difficult disease to live with. It's so unpredictable and is often described as an “invisible” illness because so many symptoms are felt by the person but not seen by others. As a result, having MS can be really isolating. We can’t always take part in activities or outings because just getting out of bed is a herculean effort. We’re not rude or antisocial - just exhausted, struggling or in pain. This isn’t the same for everyone but that sense of isolation can hit any of us. When I was diagnosed with MS 12 years ago there was no talk of a cure and with just four disease modifying therapies (DMTs). We’ve come a long way since then with twelve (if not more) treatment options now available. There are advances in biotechnology being made every day. While there is no cure, I like to think we’re getting closer. I see it as my job to keep myself functioning and as well as possible until we do. That is what Kiss Goodbye To MS is all about. It is a fun, global campaign to raise awareness and funds for vital research and to support people living with MS. The funds raised make a huge difference to people like me living with MS. My weekly yoga class means I have a reason to get out and mix with others and don’t have to spend the day talking to my cat! And it’s good exercise! A person’s tolerance to a drug and its efficacy can change over time which make advances and new treatments so important. Personally, I have worked my way through four of the drug options on my MS journey. I’m doing okay at the moment but am always on the lookout for what would be of greater benefit to me. Any new developments from MS research could have huge impact on my life and the lives of thousands of others. MS research is not restricted to pharmaceutical treatment. MS Ireland also funds research projects into living well with MS including projects around physiotherapy and mindfulness being carried out in University of Limerick. I’m a believer in physiotherapy and mindfulness - they help keep me moving, flexible and successfully get through every day So how can you get involved? You can decide how much time or effort you can spare- know that everything you do get involved with helps and will make a huge difference to the MS community. You can wear red, take a selfie to share on social media using hashtag #kissgoodbyetoms, do a dare or organise an event to raise funds. Visit MS Ireland’s campaign website – www.kissgoodbyetoms.ie for more information on the campaign and current areas of research funding. You can even text KISS to 50300 to donate €4 - how easy is that!? It is really humbling to see so many people from across the world joining together to help in the fight against MS. For such an illness that can be so isolating, that means so much to all of us with MS! Above all the Kiss campaign stands for hope. We are better together and together we can find a cure.
Kiss Goodbye to MS, 18th - 21st May with Costa We are delighted to announce Costa are joining MS Ireland to help Kiss Goodbye to MS. The weekend of May 18th - 21st will raise awareness of Multiple Sclerosis and funds for MS research. Hope to see you there!! Drop in to a participating store near you & have a brewtiful day! #kissgoodbyetoMS #bringinguscloser
This week the MS and Me AnonMS blogger, a health care professional, shares with us an insider’s perspective on disclosure. Does disclosing MS status lead to the condition overshadowing all other aspects of a person’s life and reduce them down to a diagnosis? There are times when I am tempted to mention it. Particularly when I’m having a bad day and someone in work is complaining about their back pain or their thyroid issues or their respiratory problem. I can have a brief fleeting fantasy of myself smiling and nodding and chipping in with “Well, with my multiple sclerosis…”. That’s as far as the fantasy ever goes though. Because after that bombshell I know there would be shocked faces, stammered words and the overwhelming sense of panic that I’ve dropped the explosive and can’t undo the damage. It’s not that I feel their health issues are not serious or not problematic. They just all seem so much safer and palatable to discuss over morning coffee. So, I make sympathetic noises and say nothing. I work in healthcare, so I can see the health system from both perspectives. My colleagues are wonderful, kind and caring people but the problem with working in healthcare is that our knowledge of a condition can be best understood by that sad case study or this complex patient. Our vision is often distorted by our circumstances. We tend to see people at their lowest point and on their worst day, when staying at home isn’t an option and forget about the many other days when they were coping and managing just fine. Worst case scenarios tend to overshadow the “living well” in our minds. This is problematic for me because, were I to tell anyone in work about my diagnosis, I know their understanding would be coloured by a previous interaction or difficult discharge that may have absolutely no bearing on my circumstances. Yet this will be their most memorable reference and example of MS. I know they would paint my outlook with the same brush whether they realise it or not. People with MS are still very misunderstood and pitied. It can have the ability to overshadow all other aspects of a person’s life and reduce them down to a diagnosis. I have seen people rebranded as sad anecdotes and cautionary tales. I don’t want that to happen to me. I am generally not someone who wallows in self-pity or spends time wishing that things could have turned out differently. My diagnosis gave me the drive to do the things and see the places I had been putting off. The next relapse could be closer than I think and I don’t want to look back and wish “if only I had…”. If people find out I have MS I want them to be surprised. I want them to have had the opportunity to see me, without the distraction of MS, as someone who achieved a lot and was a good colleague or friend. I want people to see me without those two letters blocking their view.
James Tracy, Leinster and Ireland rugby player, tells us about his sister Sara-Jane Tracy and how much she inspires him. “Family is a unique gift that needs to be appreciated and treasured, even when they’re driving you crazy, which happens a lot when you're the youngest and only boy with two sisters!!. As much as they make you mad, annoy you, put you back in your box from time to time, these are the people who know you the best and who love you the most. As the saying goes 'you don't know what you've got till it's gone', it's true, but we are all guilty of taking life's gifts for granted. For my sister Sara-Jane, being diagnosed with MS pales in comparison to being told she couldn't do what she loved anymore. Horses were not just a hobby for her, from an early age they were her outlet, her job, her life. Through diet, exercise, hard work and sheer determination (she gets her stubbornness from the mother!), she proved the experts wrong and was back on the horse in a matter of months after being told she would never ride again. Like everyone, she has her good days, and she has her bad days. I will never fully understand or feel the struggle she endures every day. What I do know, is the journey she has embarked on. From the lowest lows of not being able to dress herself, having to learn how to write again to losing her kidneys early this year, to the highs of getting to ride again whilst juggling a strict dialysis schedule, incredibly she is now back competing. My sister is not only someone I love with MS, she's someone I admire.” Do you love someone with MS? Then spread the love, put those thinking caps on and hold a Kiss Goodbye to MS fundraiser this May! Now is the time to rally your friends to support MS research, help fund our services and get creative. Whether you want to hold a morning tea, run a marathon, throw a movie night, or even fire walk, your fundraising options are endless and no idea is too crazy! Register now and hold a fundraiser to help us get closer to a cure for MS. www.kissgoodbyetoms.ie
This week, in a letter to her nearest and dearest, Willeke Van Eeckhoutte puts down in words how she really feels. “What do you want me to say?” Dearly Beloved, What do you want me to say? What is it you don’t understand? When someone like you says, "Well, what do you want me to say?" during moments when I feel less than cheerful, it sounds like a rejection. Not just of me, but of your understanding of what I, and we, have been going through for the past 13 years. After all this time, all the wisdom we have gained, we could be the writers of the largest MS encyclopaedia! Instead, being asked that question sounds like a betrayal. It’s like you’re using the illness I never asked for as a slur against me. The truth is, I could write you a hundred different letters and a thousand expert explanations about my symptoms and my thoughts on all those shiny plaques on my MRI images. Nonetheless, I often think, "How can you possibly relate to my life if you don’t have MS?But, with all its intricate, demeaning and unpredictable symptoms, how could I ever expect you to?" The answer is, you honestly cannot know what it is to be me, and this is not my rejection of you, far from it. But, I do need to plea for your insight, patience and empathy. Just as I am struggling to find the words in this letter, MS is an ever-changing plotline that forces me to reinvent my life’s storyline as we speak. When I snap at you, I don’t mean to. More to the point, you were probably not the problem. Like when slamming a door in anger, the doorframe, the wall or the house aren’t ever reasons for the action. Sometimes I am absolutely worn out, totally exhausted because of my illness. This exhaustion feels even more pronounced when people express how they don’t understand me. I’m tired of the illness that has me acting in ways I normally wouldn’t. I carry an imperfect brain because of illness with a fickle revolving-door manifestation. It causes me to feel claustrophobic within myself. I know that keeping up with an ever-changing illness is as challenging for you as it is for me. I also know that there are times when you’d rather be somewhere else instead of being near me. What I want you to get is I don’t wallow in self-pity nor do I jump up and down in elation because I was diagnosed with this obnoxious illness. MS has impacted so many aspects of my life, it is part of what makes my life what it is today. Makes me how I am today. Flawed? Yes. Fickle? Perhaps. Happy? I sure am! Hopeful that you would understand me? Absolutely. What I ask for is simple but it isn’t easy. You are part of my walk through life and am glad to have you with me. When you feel exasperated by what I say or do, please step into my shoes with me for one minute and we can work out what’s really going on. Lots of love, Willeke Please don't forget to check out Willeke's blog Ireland, Multiple Sclerosis and Me
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