Lysosomal Storage Disorders Support Society

Privacy Policy

Last updated: March 3, 2022


The Lysosomal Storage Disorders Support Society (hereinafter referred to as “LSDSS”, “we”, “us”, or “our”) is a New Delhi-registered non-profit patient advocacy group. Our website allows patient registration and we are committed to protecting the privacy of all personal information collected from our patients through our website. This Privacy Policy explains the types of personal information we collect, how we use the information, and the steps we take to protect your privacy. By accessing or using the LSDSS website, you agree to be bound by this Privacy Policy.


Types of Personal Information Collected: The personal information that we collect from patients registering on our website may include, but is not limited to, the following:

  • Contact Information (such as name, email address, postal address, and telephone number)
  • Demographic Information (such as age, gender, and location)
  • Information about your condition (such as name of disease and whether currently on treatment)


Use of Personal Information: We use the personal information collected from our patients for the following purposes:

  • To provide the patient with relevant information and support regarding their medical condition
  • To improve our website and services by analyzing the data collected
  • To send newsletters, promotional materials, and other communications related to the medical condition or about LSDSS


Disclosure of Personal Information: At LSDSS, we understand the importance of privacy and the trust our patients place in us to protect their personal information. That is why we have a strict policy of not selling, trading, or renting personal information to any third parties for commercial purposes.

However, we may share your personal information with third parties who may be able to help with the management of your medical condition. This could include healthcare providers, medical specialists, or other professionals who could help in the management of the patient’s condition. In such cases, we will only share the minimum amount of information necessary to provide the best possible care and support to our patients.


Log Data

We collect information that your browser sends whenever you visit our Website (“Log Data”). This Log Data may include information such as your computer’s Internet Protocol (“IP”) address, browser type, browser version, the pages of our Website that you visit, the time and date of your visit, the time spent on those pages and other statistics.



Cookies are files with small amount of data, which may include an anonymous unique identifier. Cookies are sent to your browser from a web site and stored on your computer’s hard drive.

We use “cookies” to collect information. You can instruct your browser to refuse all cookies or to indicate when a cookie is being sent. However, if you do not accept cookies, you may not be able to use some portions of our Website.


Service Providers

We may employ third party companies and individuals to facilitate our Website, to provide the Website on our behalf, to perform Website-related services or to assist us in analyzing how our Website is used.

These third parties have access to your Personal Information only to perform these tasks on our behalf and are obligated not to disclose or use it for any other purpose.


Security of Personal Information: We take the security of your personal information very seriously and have implemented appropriate technical, administrative, and physical safeguards to protect it from unauthorized access, use, disclosure, or destruction. However, no method of transmission over the internet, or method of electronic storage, is 100% secure. Therefore, while we strive to use commercially acceptable means to protect your personal information, we cannot guarantee its absolute security.


Access to and Control over Personal Information: You have the right to request access to and receive information about the personal information we hold about you, as well as to request the correction or deletion of this information. If you would like to exercise these rights, please contact us using the contact information provided at the end of this Privacy Policy.


Links To Other Sites

Our Website may contain links to other sites that are not operated by us. If you click on a third-party link, you will be directed to that third party’s site. We strongly advise you to review the Privacy Policy of every site you visit.

We have no control over, and assume no responsibility for the content, privacy policies or practices of any third-party sites or services.


Changes to Privacy Policy: We reserve the right to modify this Privacy Policy at any time and will notify you of any significant changes by posting the revised policy on our website. Your continued use of our website after any changes have been made constitutes your acceptance of the revised policy.


Compliance With Laws

We will disclose your Personal Information where required to do so by law or subpoena.


Contact Us

If you have any questions or concerns about this Privacy Policy or the handling of your personal information, please contact us at