EAC 2024

Terms and conditions

Additional terms and conditions

This document contains the additional terms and conditions related to the 7th European Aniridia Conference in Stockholm, 31 May – 2 June 2024, and all other related meetings, such as the Nordic aniridia meeting and the Aniridia youth meeting, henceforth referred to as ’the conference’ in this document. The document consists of three chapters:

1. 1. Privacy and data protection policy
2. 2. Photo/video/audio release consent for individuals
3. 3. Event code of conduct

Privacy and data protection policy

Aniridi Sverige (Aniridia Sweden) is the ‘data controller’ for the personal data about our members, supporters, event attendees, the children and families we advise and support and professionals and volunteers at organisations we work with.

This privacy notice explains how Aniridi Sverige uses and protects your personal information, including data from your use of our website.

If you have any questions about how your data is used, or want to make a request about how we use your data in the future, please contact us at info@aniridi.se.

How we use your personal data

We use your personal data to communicate with you about the conference.

We may also process personal information for certain legitimate business purposes, which include some or all of the following:

• where the processing enables us to enhance, modify, personalise or otherwise improve our services or communications with you, for your benefit
• to identify and prevent fraud
• to enhance the security of our network and information systems
• to better understand how people interact with our websites
• to provide email communications which we think will be of interest to you
• to determine the effectiveness of promotional campaigns.

Whenever we process data for these purposes we will ensure that we always keep your personal data rights in high regard and take account of these rights. You have the right to object to this processing and be removed from our system. Please bear in mind that if you do so, this may affect our ability to carry out tasks above for your benefit.

If you are a member of an aniridia association, we will not share your information for marketing purposes with other companies. If you participate as a member of our professional network, we may share your information with our sponsors. We may share your information with partners in order to fulfil your request. For example, we may need to share some of your details with an events company or partner organisation if you are due to attend one of our events. They will not have the right to hold your details or use them for any other purpose.

In the policy below, where we refer to you/your we also mean children that you are legally responsible for up to the age of 18 unless they exercise their own rights independently.

When you register for the conference, we ask you for some personal data including your contact details (name and postal address) so that we can communicate with you and provide you with the benefits available to participants. We need this personal data from you so that we can fulfil the requirements on us a membership organisation and your meet expectations as described on our membership web page and other communications.

In data protection terminology, this means that the ‘lawful basis’ for our use of the data is ‘legitimate interest’.

We will continue to keep your personal data for 2 years after the conference or until you ask us not to. You can ask us at any time to stop using or to delete your information.

How we use your data when you seek our advice and support

When you seek our advice by email, phone or via the contact us pages on our website, we will use your personal data to provide you with an answer. We keep a summary of the questions we are asked so that we can understand what questions are commonly asked, and for reporting purposes. We keep the log of questions and email threads for 2 years after the conference.

How we use your data when you volunteer for us

When you volunteer with us, we ask you for personal data to make decisions about the role and to provide support to you.

When we use your information for this purpose, we do it on the basis of our ‘legitimate interest’ as a non-governmental organisation. If you would like to see a fuller explanation of this, please ask us.

When you attend our events

When you buy a ticket for one of our events we use your personal data to send you details and administer the event. We do this on the basis of the ‘contract’ that you have with us. We will also contact you for feedback following the event and we may contact you about similar events in the future. We use your personal data in this way on the basis of our ‘legitimate interest’ as a non-governmental organisation. If you would like to see a fuller explanation, please ask us.

When you join our professional network

We use data about professionals who are involved in aniridia/rare/genetic disease healthcare, research, education to keep in touch with them about relevant issues. We do this on the basis of our ‘legitimate interest’ as a non-governmental organisation. If you would like a fuller explanation of this, please ask us.

How we keep your data safe

We store and process personal data in:

• documents and spreadsheets in an online repository provided by Google,
• an online database provided by Confetti.

These are accessed by our officials, on a need-to-know basis whilst administering the work of the non-governmental organisation.

We have contracts in place with companies who provide us with services that make sure they are also keeping the data safe. These providers cannot use your data for any other purpose, other than that set out in their contract with us. So they cannot contact you or sell your data to others.

Our officials use their personal devices for communicating with each other and you. It is possible that your data will exist on these devices. We tell officials to minimise this and to delete data as soon as possible and when they cease to be an official.

We take reasonable steps to protect the personal data collected against loss, misuse, unauthorized use, access, inadvertent disclosure, alteration and destruction. However, no network, server, database, Internet or e-mail transmission is ever fully secure or error-free. Therefore, you should take special care in deciding what information you send to us electronically and when disclosing personal information.

Your rights

You have the right to ask us for a copy of your personal data. This is called making a ‘subject access request’. If you would like to do this, please get in touch with us by email to info@aniridi.se. There is no charge for this.

When we are using your personal data with your ‘consent’, you can withdraw this at any time.

When we are using your personal data on the basis of ‘legitimate interest’ you can ask us to stop using your personal data.

If any of your personal data is inaccurate or out of date, please get in touch and we will correct it.

The Swedish Authority for Privacy Protection (IMY)

The IMY is the Swedish independent regulator for data protection. It also has a role in giving advice and guidance, and you can visit the IMY website (https://www.imy.se/en/) to find out more about your data rights under the General Data Protection Regulation (GDPR).

If you are not happy with how we are using your personal data, you can make a complaint to the IMY at https://www.imy.se/en/individuals/forms-and-e-services/file-a-gdpr-complaint/.

Photo/video/audio release consent for individuals

1.

I grant permission for the organisers and those acting on its behalf to photograph, record or video me and hence store, use and disclose my: name, image, physical likeness, voice and sounds, (collectively the 'Recordings'), without restriction worldwide, in any media or format. I will let the organisers know if I wish to withdraw this permission.

2.

My permission includes the organisers:

1. using the Recordings for any publicity in connection with its activities,
2. disclosing the Recordings to other organisations (such as media and marketing agencies) for purposes relating to aniridia and the organisers,
3. altering or modifying the Recordings in any manner and I hereby waive any right to inspect and approve a finished product or the copy that may be used in connection with them or the use to which it may be applied.

3.

I have volunteered the Recordings and agree that I will not receive or request any payment, royalty or other form of consideration for the Recordings or participation in any project of the organisers .

4.

I am of legal age and have the full legal capacity to execute this authorisation without the consent or knowledge of any other person.

Children and adults at risk of harm

Further, I confirm that I am the parent, legal guardian or authorised legal representative of the under-18-years-olds and vulnerable adults in my charge and warrant that I have lawful authority to sign this consent form for and on their behalf. I have read, and understand the terms and conditions and consent to the individual providing Recordings on these terms and conditions. This authorisation applies to the minors who may be recorded.

Event code of conduct

Introduction

All attendees, speakers, sponsors and volunteers at our physical or online events are required to agree with the following code of conduct throughout. We expect cooperation from all participants to create a safe environment for everybody.

Summary

Be respectful of other people, respectfully ask people to stop if you are bothered, and if you can’t resolve an issue, contact the organisers.

If you are being a problem, we will act, including if necessary asking you to leave the event.

Our events are expected to be a safe, enjoyable experience for everyone. We do not tolerate disrespect or harassment of participants in any form.

Code of conduct

We value respect above opinions.

All participants are expected to behave respectfully. This includes:

• Being considerate, kind, constructive, and helpful.
• Avoiding demeaning, discriminatory, harassing, hateful, or physically threatening behaviour, speech, and imagery. For example: offensive messages related to gender, gender identity and expression, age, sexual orientation, disability, physical appearance, body size, race, ethnicity, religion, technology choices, as well display of sexual images , deliberate intimidation, stalking, following, harassing photography or recording, sustained disruption of talks or other events, inappropriate physical contact, and unwelcome sexual attention.

Sexual language and imagery is not appropriate for our events and related electronic or physical media. A sexualised environment, as may be created by sexualised images, activities, clothing or other materials is also not permitted.

If you are not sure, ask someone instead of assuming.

Peaceful resolution

We believe discussions, feedback and corrections can help build a stronger, safer, and more welcoming community.

If you see someone behaving disrespectfully, you are encouraged to respectfully discourage them from such behaviour. Expect that others in the community wish to help keep the community respectful and welcome your input in doing so.

If you experience disrespectful behaviour and feel in any way unable to respond or resolve it respectfully (for any reason), please immediately bring it to the attention of an organiser. We want to hear from you about anything that you feel is disrespectful, threatening, or just uncomfortable in any way. We will listen and work to resolve the matter.

Apologising for mistakes

Should you catch yourself behaving disrespectfully, or be confronted as such, own up to your words and actions, and apologise accordingly. No one is perfect, and even well-intentioned people make mistakes. What matters is how you handle them, and avoid repeating them in the future.

Participants asked to stop any disrespectful behaviour are expected to comply immediately.

Dealing with disrespectful behaviour

If a participant engages in disrespectful behaviour, the event organisers may take any action they deem appropriate, including:

• warning the offender
• expulsing the offender from the event with no refund.
• contacting venue security, or police about the offender.

Organisers will be happy to help assist participants experiencing disrespectful behaviour, for example by contacting venue security, or police or provide escorts to feel safe for the duration of the event. We value your attendance.

We expect participants to follow these rules in all situations related to the conference.