Privacy

The Indo US Organization for Rare Diseases (IndoUSrare) has created this privacy statement in order to demonstrate our firm commitment to privacy. The following discloses our information gathering and dissemination practices for this website: https://indousrare.org/. We also describe here measures that we take to protect the security of the information we collect,  and how you can contact us with any question or concerns regarding this privacy policy.

Please read and review this privacy policy and our terms and conditions before using the https://indousrare.org/website or any resource (downloads, video, audio, applications, features, or functionalities) available directly on or through the IndoUSrare website. Please be aware that by accessing and using our website or any services provided on or through the website, you accept and agree to this Privacy Policy.  If you do not agree with our policies and practices, you may choose not to use our site or the services provided.

Cookies

Your internet browser has a feature called  ‘cookies’ which stores small amounts of data on your computer about your visit to the indousrare.org website. Our site uses cookies to keep track of your purchases or registrations and to save your password so you don’t have to re-enter it each time you are required to log in. In the future, cookies may be used to deliver content specific to your interest.

Traffic Data

Each time a visitor comes to our website, we collect some basic technical information. We use external software (Google Analytics) to keep track of traffic to our site and acquire such information as the location from which the traffic originates and which particular pages within the website are being viewed and for how long. We will be able to see that we had ‘X’ number of hits and ‘Y’ individual visitors to our site today, but we do not know their names, addresses, or other personal information.

Third Parties

We do not sell, trade, or otherwise share information about you, except as described in this Privacy Policy. We may share information with third parties who perform services on our behalf such as MailChimp, Google Analytics, etc. We may also share the information we receive electronically, with our affiliates, member organizations, subsidiaries, and partners. We do not authorize these third parties to further disclose the information except as necessary to provide support services.

Disclosure of Information

Please note that we may disclose information about you: 

  1. if we are required to do so by law, 
  2. to law enforcement authorities or other government officials based on a lawful disclosure request,
  3. when we believe disclosure is necessary or appropriate to prevent physical harm or financial loss, or in connection with an investigation of suspected or actual fraudulent or illegal activity,
  4.  when you authorize us to. 

Please note that we reserve the right to transfer any information we have about you in the event we merge or transfer all or a portion of our organization or assets (including in the event of a reorganization or dissolution).

External Links

IndoUSrare’s Website contains links to other websites. These websites operate independently from us and IndoUSrare is not responsible for the privacy practices or the content on any such linked websites. We recommend that you review the privacy policy of any such website that you visit.

Security

This site has security measures in place to protect the loss, misuse, and alteration of the information under our control. Our computers and those of our hosting company are protected by passwords, firewalls, and other security.

You are responsible for maintaining the confidentiality of any username, passwords, and other account details, and are fully responsible for all activities that occur in your account. Please remember that you should not share your password with anyone. If you are using a public or shared computer, ensure extreme caution so that others are not able to view or record your password or your other information.

Please be aware that while we do our best to protect your information, we cannot fully guarantee that information may not be accessed, disclosed, altered, or destroyed by a possible breach of our safeguards. Please understand that the transmission of information via the internet is not completely secure.  In this regard, any information you provide is at your own risk. You agree that IndoUSrare is not liable for the unauthorized release of your information.

Children’s Online Privacy Protection Act (COPPA)

Our website and services offered do not specifically cater to children and we do not market our services to children under the age of 13 years. As such, we comply with all applicable Children’s Online Privacy Protection Act (COPPA) requirements as per the United States Federal Trade Commission which puts parents in control of their child’s data.

Security of credit card/transaction information

Our website uses SSL (Secure Sockets Layer) to communicate with your browser software when you make a transaction on our website and thereby provide us with your credit card or similar information. SSL is the industry-standard security protocol, which makes it extremely difficult for anyone else to intercept your credit card/transaction details and any other information that you send us when you make payment. We take precautions to safeguard your credit card data in our internal systems.

Contact Forms

Our site uses a contact form for visitors to request information, and services. We collect contact information (like e-mail address), and financial information (like account or credit card numbers). Contact information may be used to send information about our organization or to get in touch with the visitor when necessary.

Newsletters

The IndoUSrare Newsletter is a periodic e-mail service that aims to keep subscribers updated with the latest news at IndoUSrare and the broader rare disease community. You have the option to unsubscribe from these newsletters at any point. Please note that we use the services of a third-party service provider, MailChimp, to provide this service.

Changes to our Privacy Policy

Please note that IndoUSrare reserves the right to make changes to this Privacy Policy at any time at our sole discretion. When changes are made, we will post an updated Privacy Policy on our website and ensure that the date when the Privacy Policy was last revised will be clearly identified at the top of the page. We will not be explicitly informing any visitor of these changes. All changes will be effective immediately upon posting on the website. Please check this page from time to time so you are aware of any changes, as they are binding on you.

Contacting IndoUSrare

If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you may contact us here.