2024 UDNI Conference Seoul

Welcome Message

Jong-Hee ChaeHost of UDNI, 2024 in Seoul

Dear Colleagues and Friends, As the host of the UDNI 2024 Seoul Meeting, I am thrilled to welcome you to Seoul, a vibrant city known for its rich history and dynamic culture.
Particularly, I am honored to invite you to the UDNI 2024 Seoul Meeting, marking a significant milestone—the 10th anniversary of our annual gatherings. This year’s meeting will be a great opportunity for fostering our Asian network in rare diseases and raising awareness about undiagnosed patients. This anniversary is not just a celebration of time passed but a testament to the dedication of our members, including Helene, Mikk, Dr. Gahl and many committed committee members.
Their tireless work has been pivotal in our success and continues to inspire our community.

Your expertise is invaluable as we seek to deepen our understanding and expand our reach within these critical areas. We are particularly focused on enhancing collaborations across Asia, leveraging collective knowledge to drive meaningful advancements.

Together, let’s celebrate a decade of dedication and achievements and look forward to the future of rare disease research with success.

Thank you for joining us in Seoul to mark this milestone.
Here’s to another decade of innovation, collaboration, and patient advocacy in the field of rare diseases.

With warm regards,

Terms of Use

1. General Information.
2. Your Agreement to the Terms.
3. Changes to the Terms.
4. Provision of the Website.
5. Location of the Website.
6. User Conduct.
7. Terms Relating to Content.
8. Registered Users.
9. Disclaimer of Warranties.
10. Limitation of Liability.
11. Privacy Policy.
12. Copyright Complaints.
13. Termination of this Agreement.
14. Miscellaneous Terms.

1. General Information.

13TH UDNI 2024 will be held in Seoul, September 5 to September 7 in 2024. Your use of udni2024seoul.org will always be subject to, at a minimum, the terms and conditions set out in this document. These are referred to as the "Master Terms." In addition, your use of the Website may also be subject to the terms of any legal notice applicable to the Website in addition to the Master Terms. All such terms supplementing these Master Terms are referred to below as "Additional Terms." The Master Terms, together with any Additional Terms, form a binding legal agreement between you and 13TH UDNI 2024 in relation to your use of the Website. Collectively, this legal agreement is referred to below as the "Terms." If there is any contradiction between the Additional Terms and the Master Terms, then the Additional Terms shall take precedence in relation to the Website to which the Additional Terms apply.

2. Your Agreement to the Terms.

Your access or use of udni2024seoul.org in any way signifies that you have read, understand, and agree to be bound by the terms. By accessing or using udni2024seoul.org, you also represent that you have the legal authority to accept the Terms on behalf of yourself and any party you represent in connection with your use of the Website. If you do not agree to the Terms, you are not authorized to use the Website.

3. Changes to the Terms.

13TH UDNI 2024 may change, remove, add to modify the Terms, and reserves the right to do so in its discretion. In that case, we will post the updated Master Terms or Additional Terms, as relevant, to the Website and indicate the date of revision. We may send a message to your email address, or we may display a notice on the Website indicating that the Terms have changed. All amended Terms take effect immediately. If you do not agree with any modification to the Terms, you may terminate this agreement by ceasing use of the Website. Your continued use of the Website after the revised Terms are effective indicates that you have read, understood, and agreed to those Terms.

4. Provision of the Website.

13TH UDNI 2024 makes the Website available to you on the Terms. You may only use the Website in accordance with these Master Terms and any applicable Additional Terms. In particular but without limitation, you may not use the Website for any purpose that is unlawful or prohibited by these Master Terms, any applicable Additional Terms, or any other conditions or notices that are made available on any Website.

5. Location of the Website.

The Website Services are controlled and offered by 13TH UDNI 2024 in Korea. 13TH UDNI 2024 makes no representations that the Website is appropriate or available for use in other locations. If you are accessing or using any Website from other jurisdictions, you do so at your own risk and you are responsible for compliance with local laws.

6. User Conduct.

Users agree not to use the Website Services to:

Post, use or transmit Content that you do not have the right to post or use, for example, under intellectual property, confidentiality, privacy or other applicable laws;
Post, use or transmit unsolicited or unauthorized Content, including advertising or promotional materials, "junk mail," "spam," "chain letters," "pyramid schemes," or any other form of unsolicited or unwelcome solicitation or advertising;
Post, use or transmit Content that contains software viruses or any other computer codes, files or programs designed to interrupt, destroy or limit the functionality of any computer software or hardware or telecommunications equipment or otherwise interfere with or disrupt the Website Services or servers or networks connected to the Website, or that disobeys any requirements, procedures, policies or regulations of networks connected to the Website;
Post or transmit Content that is harmful, offensive, obscene, abusive, invasive of privacy, defamatory, hateful or otherwise discriminatory, false and misleading, incites an illegal act, or is otherwise in breach of your obligations to any person or contrary to any applicable laws and regulations;
Intimidate or harass another;
Use or attempt to use another's account, service or personal information;
Remove, circumvent, disable, damage or otherwise interfere with any security-related features that enforce limitations on the use of the Website;
Attempt to gain unauthorized access to the Website, other accounts, computer systems or networks connected to the Website through hacking, password mining or any other means or interfere or attempt to interfere with the proper working of the Website Services or any activities conducted through the Website Services;
Use any means to bypass or ignore robot.txt or other measures we use to restrict access or use of the Website Services;
Impersonate another person or entity or falsely state or otherwise misrepresent your affiliation with a person or entity; or
Post or transmit any personally identifiable information about persons under 14 years of age, including without limitation in connection with the Website or the Services offered thereon.

7. Terms Relating to Content.

Responsibility for Content.

You understand that all material, data, and information, (collectively, "Content") which you may have access to through your use of the Website are the sole responsibility of the person from which such Content originated. This includes assertions that persons may make, expressly or impliedly, about the provenance and ownership of Content that they supply, upload, list and/or link to. You acknowledge that 13TH UDNI 2024 does not make any representations or warranties about the accuracy, integrity or quality of the Content made available at the instigation of users of the Website. You understand that by using the Website, you may be exposed to Content that is offensive, indecent or objectionable. Under no circumstances is 13TH UDNI 2024liable in any way for any Content, including but not limited to: any infringing Content, any errors or omissions in Content, or for any loss or damage of any kind incurred as a result of the use of any Content posted, transmitted to, linked to or otherwise accessible or made available via the Website Services.

Content You Provide.

You may only submit Content to the Website. This means that you can only submit Content that you yourself create, that is in the public domain or that you have been expressly granted the right to submit consistent with the Terms. For the avoidance of doubt, Content that infringes the rights of any third party must not be submitted. You represent, warrant, and agree that no Content of any kind submitted, posted or otherwise shared by you on or through any of the Website Services, violates or infringes upon the rights of any third party, including copyright, trademark, privacy, publicity or other personal or proprietary rights, or contains libelous, defamatory or otherwise unlawful material. Further, you represent, warrant, and agree not to submit any personally identifiable information. 13TH UDNI 2024 may review your submissions and may delete or remove without notice any Content in its sole discretion that 13TH UDNI 2024 determines violates the Terms or that may be offensive, illegal, or that might violate the rights, harm or threaten the safety of others. 13TH UDNI 2024does not endorse or support any Content posted by you. You alone are responsible for creating backup copies and replacing any Content you post on the Website, and you authorize 13TH UDNI 2024 to make copies of your Content as we deem necessary in order to facilitate the posting of your Content on the Website.

Use of Content on the Website.

You represent and warrant to 13TH UDNI 2024 that you will use any and all Content on our Website in accordance with the applicable license. By using the Website, you agree that you are solely responsible for your use of any and all Content made available thereon. You agree that you must evaluate, and bear all risks associated with, the use of any Content, including any reliance on the provenance, ownership, accuracy, completeness or reliability of such Content. In this regard, you acknowledge that you may not rely on any Content made available on the Website without your own independent evaluation of that Content. 13TH UDNI 2024 does not guarantee that Content made available on the Website does not infringe the rights of any third party.

8. Registered Users.

By registering for an account on the Website, you agree to abide by all of the terms and conditions of these Master Terms and any applicable Additional Terms. 13TH UDNI 2024 reserves the right to modify or discontinue the accounts of Registered Users and related Services at any time. 13TH UDNI 2024 disclaims any and all liability to Registered Users.

Security.

You agree to (a) provide accurate, current and complete information about you, if and as may be prompted by the registration process on the Website, (b) maintain the security of your password and identification, (c) maintain and promptly update your registration information and any other information you provide, and to keep it accurate and complete to, among other things, allow us to contact you, and (d) be fully responsible for all use of your account and for any actions that take place using your account. You may not set up an account or membership on behalf of another individual or entity.

Termination and Inactivation of User Accounts.

Your participation as a Registered User terminates automatically upon your breach of any of these Master Terms or applicable Additional Terms. In addition, 13TH UDNI 2024 may, at any time: (a) modify, suspend or terminate the operation of or access to your user account for any reason; (b) modify or change the Website and Services and any applicable Terms and policies governing your user account and related Website Services for any reason; and (c) interrupt user accounts and related Website Services for any reason, all as 13TH UDNI 2024 deems appropriate in its discretion. Your access to your account and use of the Website may be terminated by you or by 13TH UDNI 2024 at any time and for any reason whatsoever without notice. In addition, 13TH UDNI 2024 reserves the right to delete and purge any account and all Content associated therewith following any prolonged period of inactivity, all as may be determined by 13TH UDNI 2024 in its complete discretion.

9. Disclaimer of Warranties.

To the fullest extent permitted by the applicable law, 13TH UDNI 2024 offers the Website and Services as-is and makes no representations or warranties of any kind concerning the Website Services. 13TH UDNI 2024 does not warrant that the functions or content contained on the Website will be uninterrupted or error-free, that defects will be corrected, or that 13TH UDNI 2024's servers are free of viruses or other harmful components. 13TH UDNI 2024 does not warrant or make any representation regarding use or the result of use of the Content in terms of accuracy, reliability, or otherwise.

10. Limitation of Liability.

13TH UDNI 2024 shall not be responsible or liable whatsoever in any manner for any Content posted on the Website for your use of the Website Services.

11. Privacy Policy.

13TH UDNI 2024 is committed to handling responsibly the information and data we collect through our Website and agrees to use your personal information in accordance with the Privacy Policy. The Privacy Policy is hereby incorporated by reference into these Master Terms.

12. Copyright Complaints.

13TH UDNI 2024 respects the intellectual property rights of others, and we prohibit users of our Website from submitting, uploading, posting or otherwise transmitting any materials that violate another person's intellectual property rights.

13. Termination of this Agreement.

These Master Terms and any Additional Terms will continue to apply until terminated by either you or 13TH UDNI 2024 as set out below. Your right to access and use the Website terminates automatically upon your breach of any of these Master Terms or Additional Terms that may apply to any of the Website Services. 13TH UDNI 2024 may, at any time: (a) modify, suspend or terminate the operation of or access to any of the Website Services, or any portion of the Website Services, for any reason; (b) modify or change the Website Services, or any portion of the Website Services, and any Master Terms, Additional Terms, and other policies governing the use of the Website Services, for any reason; (c) interrupt the operation of the Website Services, or any portion of the Website Services, for any reason, all as 13TH UDNI 2024 deems appropriate in its sole discretion. Your access to, and use of, the Website Services may be terminated by you or by13TH UDNI 2024 at any time and for any reason. 13TH UDNI 2024 will use reasonable efforts to notify you in advance about any material modification, suspension or termination by 13TH UDNI 2024 that is not caused by your breach of the Terms.

14. Miscellaneous Terms.

This Master Term constitutes the entire agreement between you and 13TH UDNI 2024 relating to this subject matter and supersedes all prior, contemporaneous, and future communications between you and 13TH UDNI 2024.

These Terms of Use are Effective as of MAY 15, 2024.

Privacy Policy for the Participants of UDNI 2024

This policy was last updated on May, 15, 2024.

This website is operated by the secretariat (hereafter referred to as ‘SECRETARIAT’ or ‘We’) of the 13TH UDNI 2024 (hereafter referred to as ‘MEETING’), and this privacy policy applies to this website only.

At www.udni2024seoul.org (hereafter referred to as ‘WEBSITE’), the SECRETARIAT respects its participants and understands that you are concerned about privacy. We are posting this privacy policy to let you know what kind of information we collect, how it is handled, with whom it may be shared, what choices you have regarding the SECRETARIAT’s use of your information, and how you may access some of the data you provide to the SECRETARIAT.

As the SECRETARIAT continues to develop the WEBSITE and take advantage of technologies to improve the services we offer, the privacy policy may change. We therefore encourage you to refer to this policy on an ongoing basis so that you understand the SECRETARIAT’s current privacy policy.

If you have any questions about this policy, please contact our Privacy Protection Manager at info@udni2024seoul.org

What Information Do We Collect? The SECRETARIAT collects various types of information depending upon how you use the WEBSITE:

When you create account and register for the MEETING, we collect your name, residential address, email address, affiliation as well as the position and some other contact information. All the information collected in this procedure will automatically be saved in “Registration Status” for ease of reference and to help you to go on to the next step (registration, abstract submission, etc.) as quickly as possible.
Our primary goal in collecting personal information including your first name, last name, phone number(s), valid email, residential address, and credit card data is to provide you with a smooth, efficient, customized registration experience.
When you submit a question to the administrator by e-mail, we need your email address to respond; you may also provide us with additional information to help the person in charge at the SECRETARIAT answer your question.

What Are Cookies and Do We Use Them?

A cookie is a small piece of information sent by a website, which is saved on your hard disk by your computer's browser. It holds information a site may need to interact with you and personalize your experience. At the WEBSITE, we use two kinds of cookies: session cookies and persistent cookies. Session cookies exist only for as long as your browser remains open. Once you exit your browser, they go away. The SECRETARIAT uses session cookies to maintain information we need to have in order for you to register for the MEETING. For example, the Session ID cookie that we ask your browser to hold retains the ID for My Page. Without the Session ID cookie, you cannot add and modify any information that you input at the time of your sign-up.

Persistent cookies, in contrast, last from visit to visit; they do not go away when you exit your browser. At the WEBSITE, we use persistent cookies to give you a more personalized browse and to help you navigate the WEBSITE more efficiently. The SECRETARIAT will use your information to enhance your site experience. However, you can use the WEBSITE without accepting a persistent cookie. To do so, you should set your browser options to reject persistent cookies. Alternatively, you can set your browser to notify you when you receive a cookie, which gives you the opportunity to decide whether you want to accept it or not. In many instances, the Help button on your browser toolbar will tell you how you can take these steps.

Cookies can be used by a website to recognize you. But that does not necessarily mean any personal information is stored in the cookies. At the WEBSITE, we store no personal information about you in the cookies. Anything you choose to tell us about yourself (such as your address and email address) is stored safely and separately on our secured servers, and you need to provide a password to access it.

The SECRETARIAT also uses cookies to look at how groups, rather than individuals, use the WEBSITE. In our administration page, we can observe which aisles and departments are most heavily trafficked and determine the best method to improve the experience for visitors. On the web, cookies help us develop a similar understanding so that we can continue to improve the arrangement, product offerings, registration and abstract submission at the WEBSITE.

How Do We Use Your Information?

The SECRETARIAT may use your information in a number of ways, including the following:

To prepare the name tag, meals (for example welcome reception), and other materials related to the MEETING. In some specific cases, some parts of your information may be shared with the SECRETARIAT’s partner companies, which have been carefully selected and approved by us for the preparation of the MEETING.
To process any administrative or financial (related to the payment of your registration fee) matters that may arise in preparing for the MEETING
To communicate with you on any matters related to the preparation of the MEETING or to process your request regarding the MEETING.
To report on the result of the MEETING to any supporting organizations such as the local convention bureau, some parts of your information may be used (for example, your name, birth, gender, affiliation, e-mail address, etc.).
To improve the content on the official website: www.udni2024seoul.org (hereafter referred to as ‘WEBSITE’), for example, we may use cookies to find out which parts of the WEBSITE are visited the most often.
For marketing and promotional purposes, for example, the SECRETARIAT may send emails and direct mail to our registrants and prospective newsletter recipients who have signed-up for the MEETING about MEETINGs that we think may be of interest to them. We also may send you offer for discounts or free services (e.g. early-bird registration) on the WEBSITE.

Do We Share Your Information?

The information gathered may be shared with the 13TH UDNI 2024 Organizing Committee and our family associations. We also share the information with third parties, including responsible committees with which we have a relationship. For example:

When you make a purchase, the SECRETARIAT may share information about you and your transaction with other companies for the purpose of processing your transaction, including fraud prevention and credit card authorization.
You also may make a purchase from the WEBSITE through a link from another website or search engine and may use their express checkout tool to do so. When you do, please be aware that both the WEBSITE and the other website or search engine will receive your information.
In some cases, MEETING may enter into a co-branding relationship with another website that offers you services that supplement MEETING‘s assortment (e.g. tours). In those cases, you may link from the WEBSITE to another site to apply for the program. In that case, both the WEBISTE and the other website may receive your information.
The WEBISTE may team up with another website to conduct a sweepstakes or other event. In those cases, each of the participating websites may collect or receive personal information from you.
For some of our events, the WEBSITE may provide you with a link to the supplier of that product so that you may get further information. If you link to the supplier's site, the supplier may collect or receive information about you.
Like other committees, the WEBSITE may use third party advertising companies to serve ads (e.g. banners or links) on its behalf. These companies may employ cookies and action tags (also known as single pixel gifs or web beacons) to measure advertising effectiveness. Any information that these third parties collect via cookies and action tags is anonymous.

In most of the above situations, these third parties will receive your information because you will be visiting their websites or using their links and, in doing so, you may provide information directly to them. You therefore should refer to their privacy policies to understand how they handle your information and what kinds of choices you have.

The SECRETARIAT also may share your personal information with outside companies that perform services for the MEETING. For example, we may retain an outside company to manage a database containing certain participants’ information or to create and distribute an email offering. In those situations, the outside party is performing work for the WEBSITE, and the SECRETARIAT includes language in its contracts stating that your information is to be used only to provide the services requested by the SECRETARIAT.

Additionally, the SECRETARIAT may share account or other information when we believe it is necessary to comply with law or to protect the SECRETARIAT’s interests or property. This may include sharing information with other companies, committees, lawyers, credit bureaus, agents or government agencies in connection with issues related to fraud, credit or debt collection.

In the event that some or all of the business assets of the MEETING are sold or transferred, we generally would transfer the corresponding information about the participants of the MEETING.

Finally, the SECRETARIAT may share your personal information with unrelated outside companies so that they can directly promote the services to you if we feel that the companies offer services that we believe may be of interest. We also may provide you with the opportunity to create account on our website to receive email offers from other companies.

What Choices Do You Have Regarding the Use of Your Information? The SECRETARIAT provides you with a number of choices regarding our handling of your personal information.

If you wish to change your email preferences, please click on the unsubscribe link at the bottom of any SECRETARIAT’s e-mail and describe the request such as “Please do not send me email," or “Keep my email address private."

Note: Once you have submitted your email opt-out request, you should assume that it has been successfully received and your request is being processed. Please allow us 10 business days from when the request is received to complete the removal, as some of our promotions may already have been in process before you submitted your request.

Third Party Sharing

You also may use the address and phone number above to request that we not reveal your personal information to unrelated third parties for marketing purposes. If you choose to write to the SECRETAIAT, please include your name, address, and credit card account number to be used for settlement and state "NO THIRD PARTY SHARING" in your request.

Can I Access My Information?

If you are a user who has already signed up for the MEETING, you can update your information in “My Page,” and if you have questions about your status, you may also check them online in “My Page.”

If you would like, you may also an email to the SECRETARIAT.

Questions regarding your charge account may be forwarded to our Credit Customer Service Department.

Is My Information Secure?

The SECRETARIAT has put in place various physical, electronic, and managerial procedures to try to safeguard and secure the information we collect online. For example, private account and customer information is located on a secured server behind a firewall; it is not directly connected to the Internet. Encryption is a process by which a message or information is scrambled while it is in transit to the SECRETARIAT. It is based on a key that has two different parts, public and private. The public part of the key is distributed to those with whom you want to communicate. The private part is for the recipient's use only. So long as you use a browser that allows for encryption, when you send personal information to the SECRETARIAT, you use a public key to encrypt your personal information. If your information is intercepted during the transmission, it is scrambled and very difficult to decrypt. Once we receive your encrypted personal information, we use the private part of our key to decode it.

Please note however that while we implement many security measures on this site, 100% security cannot be guaranteed.

Thank you for your visit to the WEBSITE. If you have any questions or comments about this policy, please email the SECRETARIAT (info@udni2024seoul.org).