top of page

Privacy Policy

The LHON Collective takes very seriously the privacy of its website visitors and the
security of any personal information that may be provided via the organization’s
website. The LHON Collective believes you have the right to know the type of
information the organization collects, how it is protected and used, and the
circumstances under which it may be disclosed.
Any privacy policy provided on any specific LHON Collective-branded website will
always supersede this general policy. Please check the LHON Collective website(s) that
you use for the applicable privacy policy.
The Information We Collect and How it is
Gathered and Used
Personal Information
This notice applies to all information collected or submitted on the LHON Collective
website. On some pages, visitors can make information requests, register to receive
program updates or resource materials, or make financial contributions. The LHON
Collective collects only the personal information voluntarily provided through this
website. This may include, but is not limited to, your name, email address, contact
information, credit card information and any other demographic data or details related to
your background or interests that you choose to provide.
The LHON Collective does not share personal information provided by you through its
website with any other institution, company, government or governmental agency or
other organization. The LHON Collective is obligated to disclose personal information in
exceptional cases as required by US law, including a subpoena.
The LHON Collective uses the information you provide about yourself for various
services, which are disclosed to you when you provide the information. Examples
include email newsletters, invitations to LHON Collective events, or for information
alerts about LHON Collective programs or activities. In some cases, the LHON
Collective uses this information, including the email addresses and contact information
gathered from our websites, for fundraising activities.
Information collected on the LHON Collective website are never used for commercial
purposes.
Site Usage Information

When visitors browse, read or download information on the LHON Collective website,
limited, anonymous data is collected about the visit. For instance, the web server may
record the numerical Internet Protocol address of your computer; information about your
browser and operating system; date and time of access; and the Internet address and
page that linked (referred) you to our site. If you search the site, your search requests
may be logged. The LHON Collective uses this information to measure the number of
visitors to different sections of the site, diagnose and correct system errors, and conduct
research—all with the sole objective of improving the information services, features and
usability of the site.
Cookies
The LHON Collective uses cookies to distinguish you from other users on its website.
Doing so helps us improve our website and provide you with a good experience.
However, cookies have received criticism because parties can also employ them to
invisibly assemble information about a user’s browsing habits for marketing purposes.
The LHON Collective uses cookies only to improve the user experience within the
context of a single browser session or between website visits, and not for any form of
information gathering about user browsing. Persistent cookies remain on your personal
computer or mobile device when you go offline, while session cookies are deleted as
soon as you close your web browser. The LHON Collective use both for the following
purposes:
Necessary / Essential Cookies
Type: Session Cookies
Administered by: Us
Purpose: These are cookies that are required for the operation of our website. They
help to authenticate users and prevent fraudulent use of user accounts.
Functionality Cookies
Type: Persistent Cookies
Administered by: Us
Purpose: These cookies allow us to remember choices you make when you use our
website. The purpose of these cookies is to provide You with a more personal
experience and to avoid you having to re-enter your preferences.
Tracking and Performance Cookies
Type: Persistent Cookies
Administered by: Third-Parties
Purpose: These cookies track information about traffic to the website and indicate how
visitors use the site. The information gathered may directly or indirectly identify you as
an individual visitor. This identification typically results from the collection of information
typically linked to a pseudonymous identifier associated with the accessing.
Targeting and Advertising Cookies
Type: Persistent Cookies

Administered by: Third-Parties
Purpose: These cookies track your browsing habits to show advertisers content likely to
interest you. These cookies use information about your browsing history to group you
with other users possessing similar interests. Based on that information, and with our
permission, third party advertisers can place cookies that enable them to suggest third
party websites based on those interests.
Social Media Cookies
Type: Persistent Cookies
Administered by: Third-Parties
Purpose: We may also use various third party plug-ins from social media networking
websites such as Facebook, Twitter, or LinkedIn to report usage statistics of the
Website and to provide social media features. These third-party plug-ins may store
Cookies. We do not control these Social Media Cookies. For more information, please
refer to the relevant social media networking's website privacy policies.
Every user will be given the opportunity, via a cookie banner, to refuse or withdraw their
consent when visiting the LHON Collective website. However, the refusal of certain
cookies may prevent the full functionality and/or create some inconveniencies when
using our website.
The LHON Collective Commitment to Data Security
To prevent unauthorized access, maintain data accuracy and ensure the correct use of
information, The LHON Collective uses industry standard SSL (Secure Sockets Layer)
encryption to protect the confidentiality of your personal information and the security of
your transaction during transmission.
Overview and Donor Access Rights
The LHON COLLECTIVE appreciates those individuals and entities whose contributions
finance the LHON COLLECTIVE’s operations (“Donors”). To that end it wishes to
explicitly clarify the types of Donor Information it receives, and its procedures with
respect to this information.
Further, in addition to other safeguards listed in this privacy policy, the LHON
COLLECTIVE confirms that (unless required to comply with law, statute, or regulation) it
does not sell or share a Donor’s Personal Data without its explicit consent. A Donor that
has provided such consent may revoke such consent at any time via written notice and,
subject to exceptions stated in applicable law, the LHON COLLECTIVE shall act in
accordance with such revocation. For avoidance of doubt, this addendum applies
equally to Donor Personal Data received through this website and any other forms of
information acquisition.

Any revocation of consent may be submitted to the following email
address: mmarsh@lhon.org
With respect to offline donations:
1. The LHON COLLECTIVE staff may obtain basic personal data including
address, email, and phone number. Incidental to the form of payment, the staff
involved with donation in the form of a physical intake may have access to
information located on a check. Such physical checks will be discarded upon
either (a) physical cashing of the check, or (b) in line with the
recommendations provided by the LHON COLLECTIVE’s bank’s mobile
application.
2. Offline potential donors may prefer to provide credit card information. Staff will
not solicit such information, and shall inform the donor of other payment
options, prior to accepting this information.
3. Staff responsible for finance and accounting may have access to such
information provided by Donors as necessary for financial accounting of
donations in line with generally accepted practices.
4. Basic personal data and donation amounts may be uploaded into databases
utilized to document the donor-organization relationship.
5. The LHON COLLECTIVE will periodically review personnel, or categories of
personnel, having access to the information described in points (1)-(4). It will
periodically refine access rights, limiting access to those reasonably having a
need to know. Accounts having such access will be password protected.
6. The LHON COLLECTIVE may utilize third party software and vendors in
connection with this process. It shall periodically review such vendors to verify
their privacy practices, and commitment to processing data in line with best
practice (including the use of encryption technologies) and applicable the
LHON COLLECTIVE’s policies.
7. The LHON COLLECTIVE will retain such Donor Information in line with its
Data Retention Policies.
With respect to online/digital donations:
1. Payments are processed through third party sites and vendors, and monitored
by Communications and Finance Staff. The LHON COLLECTIVE collects
basic information (such as name, email, and other information that Donor
elects to provide), and the amounts paid. Encrypted information and partial
credit card information may be transmitted from such providers to verify
payment.
2. Staff responsible for finance and accounting may have access to such
information as necessary for financial accounting of donations in line with
generally accepted practices.
3. Basic personal data may be uploaded and stored into databases utilized to
document the donor-organization relationship.

4. The LHON COLLECTIVE will periodically review personnel, or categories of
personnel, having access to the information described in points (1)-(3). It will
periodically reevaluate access rights, limiting access to those reasonably
having a need to know. Accounts having such access will be password
protected.
5. The LHON COLLECTIVE may utilize third party software and vendors in
connection with this process. It shall periodically review such vendors to verify
their privacy practices (including the use of encryption technologies), and
commitment to processing data in line with best practice and applicable the
LHON COLLECTIVE’s policies.
6. THE LHON COLLECTIVE will retain such Donor Information in line with its
Data Retention Policies.

Data Subject Rights and Requests
You have rights when it comes to how we handle your personal data. These rights vary
depending on where you reside, but may include rights to:
 Transfer or access personal data
 Correct personal data
 Erase personal data
 Object to the processing of personal data
 Withdraw consent to further processing of personal data
A LHON Collective representative will respond to your request in a timely manner, and
in no event longer than 30 days. To initiative this process, you will be required to submit
this Data Subject Access Request Form. Should you have additional questions or
concerns, please contact our Data Protection Unit at mmarsh@lhon.org.
Changes to this Policy
The LHON Collective retains the right to make changes, at its sole discretion, to this
Privacy Policy Statement or the privacy policies of its various program websites, which
will be posted in an accessible place on the pertinent site.
How to Contact the LHON Collective
Should you have other questions or concerns about these privacy policies, please send
us an email at mmarsh@lhon.org.

bottom of page