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.
This policy aims to inform MS Ireland website users that cookies are used on the website and how to go about opting out of cookie usage.
This policy applies to all visitors to the MS Ireland website
Cookies are small text files that are stored on your computer by the websites that you visit. Cookies enable some information about your visit to be recorded and enable websites to recognise a user anonymously based on the information stored in the cookie.
Cookies can be either ‘session’ or ‘persistent’. Session cookies are only stored for the duration of usage of the site and are deleted once the browser is closed. Persistent cookies can remain on your computer for longer specified periods.
There are two types of cookies: First-party cookies that are set by the site you are visiting and Third-party cookies which are set by other sites that have features embedded on the site you are visiting – such as advertisements or YouTube videos.
We use the following local cookies:
• Google Analytics to track users as they navigate the website – these cookies are named: _utma, _utmt, _utmb, _utmc, _utmz
• AddThis – provides access to social sharing buttons for Facebook, Twitter, etc
• Cookies to allow use of the shopping cart and to process payments
We also use Third-party cookies:
• YouTube to embed video content into our site
• DoubleClick and Google Analytics to allow us to advertise and monitor performance on Google
Cookies can be controlled through the settings on your browser, use the link specific to the browser you use to get information on how to do this.
There are a variety of free tools available that you can use to block cookies to help protect your online privacy. These are listed here for information purposes and do not represent an endorsement of any particular product.
If you have any questions in relation to this Privacy Statement please contact us at firstname.lastname@example.org.
This week Grace Kavanagh writes about what the International Day of People With Disabilities means to her and what we as individuals understand about living with a disability. I’ll forgive you if you weren’t aware that there was such a thing as International Day of People With Disabilities. I wasn’t either before some research. It is an initiative set up by the UN in 1992 to promote understanding of disability issues and to raise support for those with disabilities to enable them to participate equally in society. It is held yearly on December 3rd and the theme for this year is “Inclusion is for everybody”. The day is recognised at the UN headquarters in New York with organisations and groups around the world encouraged to hold their own events. I love the idea of social equality but think in reality we have a long way to go. Raising awareness is one thing but raising understanding and empathy is quite another and this is where I think the focus should be. So what do I as a person with disability think the International Day of People With Disabilities should include? I don’t think any one person can understand all the challenges people with differing disabilities face and I certainly can’t speak for everyone. I do however think that we all need to think a bit more about other people and try not to be entirely caught up in our own worlds. We have all been guilty of unknowingly causing issues for others by our actions so here are some things to consider in our everyday lives that might have an impact on people with disabilities. ● Viewing things from the perspective of the person with a disability would help us all to see how our actions can impede others. It could also help us to be less irritated or frustrated when we understand the challenges the other person is facing. ● Experiences that give an insight into the life of someone with a disability can really boost understanding. For example the MSunderstood cafe gives people the opportunity to view the world from the perspective of someone living with MS. I’ll be sending my husband when it comes back to Dublin! ● In a similar way, I know of a charity for the visually impaired that requires employees to spend time wearing glasses that distort vision and use a wheelchair so they understand the difficulties people they work with may have. ● I taught computing to a lady with hearing difficulties. She had a sign language interpreter who enabled her to be an equal participant in the class. I learnt to address my comments to her and not her interpreter, just as I would with any other member of the class. ● Think before you park your car! Parking on pavements or up on the kerb leaves no safe route for people in wheelchairs, while parking in disabled bays when you don’t need to means a person with a disability can’t use the facility. ● Don’t get me started on the pavements in Dublin! They are a hazard to everyone but in particular those with mobility issues. Try not to add to the problem by leaving obstructions like bins on the path. Disabilities aren’t always visible. You don’t know what someone else is coping with just by looking at them. They could be living with chronic pain but look fine. Try not to judge what you don’t know. Check out Grace’s blog, www.mycrazymslife.com for her perspective on living with multiple sclerosis. Join in the activities of the UN International Day of People With Disabilities click here
Living with a Neurological Condition in Ireland Neurological Alliance of Ireland (NAI) have launched a new survey "Living with a Neurological Condition in Ireland" to examine the practical issues faced by people with neurological conditions & their families. You can complete this survey if you are an adult (over 18 years), diagnosed with a neurological condition or if you are a family member currently caring for an adult with a neurological condition. The survey should only take 10-15 minutes to complete and your replies are completely confidential. The closing date for responses is Friday 14th December 2018. Get in touch If you have any questions about completing the survey, you can e mail email@example.com or call (01) 8724120. originally published 9.11.2018
This week Aoife Kirwan writes about the upcoming event for Young People with MS on 29th November 2018 (6pm-8pm) in the Davenport Hotel, Dublin. Register for the event here For almost eight years I have been living with the knowledge that I have MS. My diagnosis came at a time when I was just getting started in adult life. Years of education were behind me and I was in the final months of my degree. Prior to my diagnosis, I had a very clear vision of what I wanted in life, what I wanted to do, to be, to become. This moment in time changed everything for me. The future I had envisioned for myself was now unclear. The main symptom that I had was optic neuritis in my right eye which left me with just about 2% vision in that eye. I had been working towards becoming a secondary school art teacher. I felt like I had to say goodbye to that idea, as I didn’t feel it would be a secure enough given the issue I had with my sight. I felt like I was at a crossroads. It was still early enough to change my mind about the best path forward but that didn’t make it easy. The promises that I had made myself were destined to remain unfulfilled. I feared what was to come because for years I had been looking in one direction and this diagnosis forced me to look around. It made me uncomfortable. The way I felt about myself and the way I felt the world saw me, changed. My sense of identity was shaken. I didn’t think a support group would be my kind of thing. I didn’t like the diagnosis; I was all about trying to be positive and felt that the niggling negative thoughts might grow stronger if I saw other people who were more seriously disabled by MS than me. What I didn’t realise then was that I needed connection. To speak to others my age who were living with MS. I needed information that was relevant to me, support around decisions that we often come up against in early adult life like education, relationships, self-acceptance. Early adult life sees people lay the foundation blocks for their future and I needed support with making my foundation solid. Next Thursday, November 29th MS Ireland, in collaboration with Novartis, is hosting MS Explored, an information and support event for young people living with multiple sclerosis (18-35). Speakers include Moira Tzitzika who will talk about Relationships and Intimacy. Moira has a PhD in Psychology and specialises in Disability Counselling and Sexual Medicine at the European Society of Sexual Medicine. Psychologist Karen Belshaw, founder of Stress Management Ireland, will speak on Mental Resilience and past-president of the Union of Students Ireland, Michael Kerrigan will show us Road-mapping for Success. This event will take place in the Davenport Hotel, Dublin from 6-8pm. A live stream will be available for those who are not able to attend in person. Students unions around the country have been incredibly helpful in organising on-campus hubs where the live stream will be shown. Questions for the speakers can be sent in by direct messaging our social media platforms. The event is free to attend but please register using the following link: https://www.eventbrite.ie/e/ms-explored-meeting-tickets-52707199653 This is a great opportunity for young people living with MS to meet with their community. Connecting with others who are at a similar stage of life and navigating similar issues can be a very empowering experience and I look forward to seeing you there.
Monday, November 19th is International Men’s Day, a celebration of the positive value men bring to the world, their families and their communities. Today Keith Byrne shares his experience and talks about ‘manning up to MS’. I've been lucky to share my life with some great men. My Dad, my Granddads, extended family members, colleagues and friends. I think that's what made it so hard for me to initially open up about my MS diagnosis. It was as if I didn't belong in the same category as these men that I idolised. I in no way tick any of the pre-requisites society associates with being a ‘manly man’. I'm not the strong/silent type or ‘tall, dark & handsome’ at 5ft. 4 and bald. There is also the statistic that more than twice as many women are diagnosed with MS than men. I was a gamma male, never to be an alpha. Yet being diagnosed with MS awoke a strength in me that I always knew was there yet I never felt I had a reason to channel it. Once I came to terms with my diagnosis things started to improve both mentally and physically. This didn't happen overnight. It took a number of months as well as discussions with my MS nurse, nutritionist and my close family too. Eventually, after my first ‘MS Newly Diagnosed Day’ I gathered the strength to come out of the MS closet. Talking about my diagnosis is something I've learned to be very comfortable with. I've since done newspaper and radio interviews. I also started seeing a counsellor. Over the summer, I took part in a video for my job to promote mental health awareness. As part of the promotion for the video, I was asked to speak to a group of approximately fifty of my peers (most of whom I'd never met in person). Each scenario has been a massive challenge as each time I felt totally out of my comfort zone. I can develop an inherent shakiness in these circumstances and I'm conscious that might come across when I'm talking to a crowd of people. Yet I find each time I challenge myself, I’m a little less nervous and little more brave the next time around. It can't be underestimated how much stress affects our health. I'm intentionally putting myself in situations where my confidence is stretched to its core. It might sound like I'm bringing unnecessary burdens upon myself but there is method to the madness. I feel that, by deliberately challenging myself, I might be that little bit more prepared for situations that are out of my control. I wouldn't say I do this on a daily basis. Ultimately, I have relapse remitting MS From time to time I need a break away from everything. Outside of the daily challenges caused by MS, like fatigue and brain fog, my biggest challenge to date was the Dublin Marathon at the end of October. In the 3 and a half years or so since my mobility and vision returned back to a somewhat acceptable level I've been trying maintain an active lifestyle. A couple of lunchtime runs a week and maybe a longer one at the weekend led to me signing up for the marathon. The crowds of people out showing their support from the outset of the 26.2-mile trek was so uplifting. I especially felt humbled when I was struggling around mile 20 and I got a pat on the back from a guy as he ran past wearing the same TeamMS t-shirt as me, "Come on pal not long to go, you can do it". Thanks for the motivation and I'm proud to say I did do it! On the way into the marathon I met a man from Cork who was in Dublin for the day just to run it. We shared a taxi into town. He told me he was 66 and on his 313th marathon. An unbelievable achievement by any means but he also said he only ran his first one in 1999. I'm sure he had his reasons for starting something so taxing relatively late in life and it made me think; we all have our own path to follow and sometimes we get knocked off track. MS has certainly changed the course of my path. Perhaps, in some strange way, it's helped point me in the right direction. I no longer feel inferior to the men who inspire me. I have gained the awareness to realise they already see me as their equal. To all the men out there, fellow MSers, Carers, well-wishers and generally sound lads I'll leave you with this quote by Liverpudlian songwriter John Power: "Someone will always be more than I'll ever be so then I'll be myself"
Now CLOSED for applications The IPPOSI Patient Education Programme 2019 is now open for applications (Deadline for receipt of applications midnight on Sunday, November 18th 2018). The programme delivers training for patients, carers and advocates living in the Republic of Ireland on health research and innovation. This includes education modules on clinical trials, medicines regulatory affairs and health technology assessment. The programme is designed to enable and empower more patients and patient advocates to work effectively with Irish and EU-level health research & technology partners, agencies & authorities. Further details on the programme and how to apply are available here. Potential candidates may be interested in these short videos, which capture student feedback on last year’s pilot programme and their reasons for taking part.
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