Information on common personal data handling
information provided on the site is meant to complement and not replace any advice or information from a health professional
Informative document according to and in consequence of the European Law
Privacy Policy
RBDD.org is an online service that provides health informations. Our website, and related applications (collectively, our “Website”) are part of the RBDD.org which is operated by Fondazione Villa. More details about RBDD.org can be found below under “How you can contact us.”
We understand that providing information online involves a great deal of trust on your part. We take this trust very seriously, and make it a high priority to ensure the security and confidentiality of the personal information you provide to us when you visit our Website or use our services. Before submitting your personal information to us, please read this Policy carefully to learn about our privacy practices. By visiting RBDD.org’s website, ,www.RBDD.org you are accepting the practices described herein.
What information we collect from you
How we use your information
With whom we share your information
How you can access your information
Your choices with respect to the collection and use of your information
How we protect your information
Children's privacy
External links
Changes to this Privacy Policy
How you can contact us
What information we collect from you
In General.
We receive and store any information you enter on our Website or give us in any other way. This includes information that can identify you ("personal information"), including your first and last name, telephone number, postal and email addresses, user name and password. We may also request information about your plans, style, and preferences. You can choose not to provide information to us, but in general some information about you is required in order for you to receive an account being a registered member. For example, only registered members are able to post reviews, participate in discussion forums, email RBDD.org content to themselves and others, access members-only newsletters and enter surveys. In addition, some information is also required in order for you to ask us a question or initiate other participation on our site.
Information About Others.
You will have the opportunity to provide contact and science-related information for other people through our Website. You must obtain the consent of other individuals prior to providing us with their personal information, as any access to view or modify their information will be available only through your account.
Information from Other Sources.
We also may periodically obtain both personal and non-personal information about you from affiliated entities, business partners and other independent third-party sources and add it to other information about you. For example, if you access third party services, such as social media services, through our Website or before coming to our Website, we may collect information such as your user name, password, and other information made available to us through those services.
Automatic Information.
We automatically collect some information from your computer or Device when you visit RBDD.org. For example, we will collect session data, including your IP address, Web browser software, and referring website. We also may collect information about your online activity, such as content viewed, pages visited, and searches facilitated or made. our goals in collecting this automatic information is to customize your user experience.
Location Information and Other Information from Devices.
When you use an Application, we will collect and use information about you in generally similar ways and for similar purposes as when you use the RBDD.org website. In addition, we may collect information about your location if you have instructed your Device to send such information to the Application via the privacy settings on that Device You can change the privacy settings of your Device at any time, in order to turn off the functionality to share location information with the Application
Cookies and Other Web Technologies.
Cookies are small data text files and can be stored on your computer’s hard drive or your Device (if your Web browser permits). RBDD.org, its affiliated websites, and Apps use cookies for the following general purposes:
To help us recognize your browser as a previous visitor and save and remember any preferences that may have been set while your browser was visiting our site. For example, if you register on our site, we may use cookies to remember your registration information, so you do not need to log into our site each time you visit. We also may record your password in a cookie, if you checked the box entitled "Save this password for automatic sign-in." Please note that member IDs, passwords, and any other account-related data included in such cookies are encrypted for security purposes.
To help us customize the content, experience, and advertisements provided to you on our websites and Apps and on other websites across the Internet. For example, when you access a web page, a cookie is automatically set by us, our service providers, or our partners to recognize your browser as you navigate on the Internet and to present you with information based on your apparent interests.
The Help portion of the toolbar on most browsers should tell you how to prevent your browser from accepting new cookies, how to have the browser notify you when you receive a new cookie, or how to disable most types of cookies. Please note that if you refuse to accept cookies, you may not be able to access many of the travel tools offered on our sites.
How we use your information
RBDD.org uses the information we collect about you for the following general purposes: for registration and to manage your account, including to allow your access to and use of our site; to communicate with you in general, including to provide information about RBDD.org and invitations from the RBDD.org community; to enable us to publish your reviews, forum posts, and other content to the RBDD.org community; to facilitate your booking of travel reservations; to respond to your questions and comments; to measure interest in and improve our products, services, and Website; to notify you about special offers and products or services available from us or our partners that may be of interest to you;to otherwise customize your experience with RBDD.org, to enforce our Terms of Use; and as otherwise described to you at the point of collection.
Please review "Your choices with respect to the collection and use of your information" below.
With whom we share your information
RBDD.org may share your information with the following entities:
Referring Websites. If you were referred to RBDD.org from another rbdd website or application, we may share your registration information, such as your name, email address, mailing address, about you with that referring website. We have not placed limitations on the referring websites’ use of personal information and we encourage you to review the privacy policies of any website that referred you to RBDD.org.
Companies within our corporate family. We may share your personal information within the RBDD.org Network Group, as well as with affiliate websites. This sharing enables us to provide you with information about services, both health-related and other, which might interest you.
To investigate, prevent, or take action regarding illegal or suspected illegal activities; to protect and defend the rights, property, or safety of RBDD.org, our customers, or others; and in connection with our Terms of Use and other agreements.
If you choose to create a profile on RBDD.org, certain information in your profile will be publicly viewable and identifiable via your screen name. You will have the ability to view your profile as members of the public will see it. Additionally, if you choose to participate in our member-to-member communications programs, other RBDD.org members may contact you by using RBDD.org as an intermediary; however, RBDD.org will not share your email address with any other members nor display it any public manner. All RBDD.org members have the option to turn off the member-to-member communication features at any time.
Other than as set out above, you will be notified when personal information about you will be shared with third parties, and you will have an opportunity to choose not to have us share such information.
We also may share aggregate or anonymous information with our network. For example, the number of visitors our Website receives . This information does not contain any personal information and is used to develop content and services we hope you will find of interest.
How you can access your information
We take reasonable steps to ensure that your information is relevant to its intended use, accurate, and complete. You can access and update your contact information by using the contact form of RBDD.org Website. You can close your RBDD.org account by contacting us by e-mail. We will send you an email to confirm your request. Please note that after you close an account, you will not be able to sign in or access any of your information. However, you can open a new account at any time. Please also note that we may retain certain information associated with your account in our archives, including for analytical purposes as well as for recordkeeping integrity.
Your choices with respect to the collection and use of your information
As discussed above, you can choose not to provide us with any information, although it may be needed to take advantage of certain features offered on RBDD.org.
You also can add or update information and close your account as described above. If you decide to close your RBDD.org account, we will deactivate your account and remove your profile information from active view. Please note, however, that we may retain in our files some information associated with your account and past transactions for purposes including backups, fraud prevention, dispute resolution, investigations, and compliance with legal requirements.
As a registered RBDD.org member, you can modify your email subscription choices .
Email Communications. RBDD.org wants to make it easy for you to take advantage of science-related opportunities on our Website. One way we do this is by sending you email messages that contain information about your apparent interests. Please note that you will have the opportunity to choose not to receive these email messages in any such email we send.
The Help portion of the toolbar on most browsers will tell you how to prevent your browser from accepting new cookies, how to have the browser notify you when you receive a new cookie, or how to disable cookies altogether. Please note that if you refuse to accept cookies from RBDD.org, you will not be able to access portions of our site.
How we protect your information
We want you to feel confident about using RBDD.org, and we are committed to protecting the information we collect. While no website can guarantee security, we have implemented appropriate administrative, technical, and physical security procedures to help protect the personal information you provide to us. For example, only authorized employees are permitted to access personal information, and they only may do so for permitted business functions. In addition, we use encryption when transmitting your personal information between your system and ours, and between our system and those of the parties with whom we share sensitive information, and we employ firewalls and intrusion detection systems to help prevent unauthorized persons from gaining access to your information.
Children's privacy
RBDD.org is a general audience site and does not offer services directed to children. Should an individual whom we know to be a child under age 13 send personal information to us, we will delete or destroy such information as soon as reasonably possible.
External links
If any part of the RBDD.org Website links you to other websites, those external websites do not operate under this Privacy Policy. We recommend that you examine the privacy statements posted on those other websites to understand their procedures for collecting, using, and disclosing personal information.
Visiting our Website from outside the EU
If you are visiting our Website from outside the EU, please be aware that your information may be transferred to, stored, and processed in the Europe where our servers are located and our central database is operated. The data protection and other laws of the EU and other countries might not be as comprehensive as those in your country, but please be assured that RBDD.org does take steps pursuant to laws in the Europe to ensure that your privacy is protected. By using our services, you understand that your information may be transferred to our facilities and those third parties with whom we share it as described in this Policy.
Changes to this Privacy Policy
RBDD.org may change or modify this Privacy Policy in the future. We will note the date that revisions were last made to this Privacy Policy at the bottom of this page, and any revisions will take effect upon posting. We will notify our members of material changes to this Privacy Policy by either sending a notice to the email address you provided to us or by placing a notice on our Website. We encourage you to check this Privacy Policy from time to time to review the most current version.
How you can contact us
If you have questions about this Privacy Policy, please contact us at:
LUIGI VILLA FOUNDATION
Via Pace, 9 - 20122 MILAN, ITALY phone +39 02 55 03 54 14 E-Mail: info_at_rbdd.org
The Rare Bleeding Disorders Network
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- Last Updated on Thursday, 23 May 2024 11:05
Utility of next generation sequencing for diagnosing and managing genetic disease in developing countries
A new article has been published in the European Journal of Human Genetics, discussing the role of next generation sequencing (NGS) as a diagnostic and management tool for critically ill children with a suspected genetic disorder, particularly in developing countries.
As NGS-based techniques continue to be developed and refined, they show promise for diagnosing and evaluating genetic disorders in critically ill infants and children. However, data on its utility in developing countries remains limited. In this study, the authors analysed the use of NGS on children with a suspected genetic disorder requiring critical care at a hospital in Northern India. They assessed the diagnostic rate of these strategies, as well as the clinical impact on patient management.
The study led to a precise molecular diagnosis in 32 patients out of the total cohort of 70. Of these, a significant change in clinical outcome was observed in 13 cases. These changes resulted from various modifications to treatment plans, including a change in medication, specific dietary management, redirection to palliative care, avoidance of a major procedure, and better reproductive counselling.
One of the main limiting factors to using NGS in this and similar contexts observed by the study was the delay in turn-around time for sequencing results. Due to resource constraints, rapid and ultra-rapid sequencing was not available in the study hospital. This is representative of conditions in the majority of healthcare settings in developing countries.
Overall, despite this challenge, the study still found that NGS has great utility for managing critically ill patients with suspected genetic disorders in developing countries. This is largely due to the clinically significant impact of being able to achieve a precise molecular diagnosis.
