Last Updated: September 2026

01 | Introduction

Neurofibromatosis Ontario, also known as The Neurofibromatosis Society of Ontario and referred to throughout this policy as NFON, we, us, or our, is a volunteer-led, registered Canadian charity supporting Ontario families and individuals affected by Neurofibromatosis Type 1, NF2-related Schwannomatosis, and Schwannomatosis.

CRA Registration Number: 119053775RR0001

This policy explains what personal information NFON collects through nfon.ca and through our programs, why we collect it, how we use and protect it, and the choices available to donors, members, volunteers, program participants, and website visitors.

Most Canadian charities, including NFON, fall outside the strict scope of the federal Personal Information Protection and Electronic Documents Act (PIPEDA), because PIPEDA generally applies to commercial activity rather than charitable work. NFON follows PIPEDA’s privacy principles as a matter of policy because they reflect the standard our donors, members, families, and volunteers reasonably expect from an organization handling their personal information.

02 | Scope of This Policy

This policy applies to personal information NFON collects through nfon.ca and through direct contact with our volunteers and board, including membership and volunteer applications, donations, event and program registration, mailing list sign-ups, and correspondence by phone, mail, email, or online forms.

This policy does not apply to independent third-party websites or services that NFON links to, including CanadaHelps and PayPal. Those organizations operate under their own privacy policies and security practices. We encourage you to review their policies when using their services.

03 | Information We Collect

Information You Give Us Directly

Depending on how you interact with NFON, we may collect:

  • Contact form information, including your name, email address, phone number, and the content of your message.
  • Mailing list information, including your email address and, where provided, your name and other contact information.
  • Membership and volunteer information, including your name, mailing address, email address, phone number, and other information you choose to provide on NFON forms or in correspondence with us.
  • Direct donation information, including contact information provided when making an e-transfer or other direct contribution so that NFON can maintain donation records and issue tax receipts where applicable.
  • Program and event information, including information supplied by a parent or guardian when registering a family for activities such as NF Family Camp.
  • Information you provide directly to NFON volunteers or board members by phone, email, mail, online forms, or in person.

NFON may also receive family stories, photographs, testimonials, or similar materials. We publish personal stories or identifiable content only with appropriate permission.

Information Related to Donations

When you donate through CanadaHelps or PayPal, the donation is processed on that provider’s platform rather than directly on nfon.ca. NFON does not receive or store your full credit card or payment card information.

Depending on the service and the information you provide, NFON may receive information such as your name, email address, mailing address, donation amount, and a donor message or dedication.

CanadaHelps also allows donors to make anonymous donations. In some cases, limited donor information may therefore be available to NFON.

Information Collected Automatically

Like most websites, nfon.ca may collect technical information through standard web technologies. This can include information such as your IP address, browser type, device type, and pages visited.

NFON’s website currently uses Google Tag Manager to manage website tags and related technologies. The specific technologies or services managed through Tag Manager may change over time.

04 | How We Use Your Information

We use personal information to:

  • respond to questions and requests;
  • process and record donations and issue tax receipts where applicable;
  • process membership and volunteer applications;
  • coordinate programs, events, support groups, and volunteer opportunities;
  • communicate with families seeking Neurofibromatosis-related information and support;
  • manage mailing lists, newsletters, event notices, and organizational updates;
  • maintain financial, membership, and governance records;
  • administer events such as NF Family Camp;
  • understand and improve the use of nfon.ca; and
  • meet legal, regulatory, charitable, financial, and governance requirements.

NFON does not sell, rent, or trade donor, member, volunteer, or program participant information.

05 | Email Communications and Consent

NFON’s email communications are governed by Canada’s Anti-Spam Legislation (CASL). Depending on how you came to be on our list, we rely on one of two forms of consent:

  • Express consent: you actively signed up for our mailing list, for example through the “Join Mailing List” form on our website.
  • Implied consent: you have an existing relationship with NFON, such as a recent donation, membership, or volunteer role. Under CASL, this kind of implied consent is time-limited and is generally refreshed with express consent to continue receiving emails over the long term.

Mailing list and contact requests received through NFON are reviewed manually. NFON maintains mailing information through its internal records, and names and email addresses, where applicable, are manually added to Mailchimp for email communications. Home mailing addresses are not added to Mailchimp for this purpose.

Every email from NFON identifies who it is from and includes a way to unsubscribe. If you ask to be removed from our mailing list, we will act on that request within the timeframe CASL requires.

06 | Cookies and Website Analytics

Cookies are small files or similar technologies that websites may place on or access through your device to support site functionality and understand website use.

nfon.ca currently loads Google Tag Manager, which allows website tags and related services to be managed centrally.

Depending on the website’s configuration, these technologies may collect technical information such as browser type, device information, IP address, pages visited, and interactions with the site. NFON may use this information to maintain, understand, and improve nfon.ca.

Third-party technologies used by the website may operate according to their own privacy policies and data-handling practices.

Most web browsers allow you to block or delete cookies through browser settings. Disabling cookies may affect the operation of some website features but should not prevent access to NFON’s core informational content.

07 | How We Share Your Information

We share personal information only in the following circumstances:

  • With NFON board members, volunteers, and program coordinators who need it to carry out their responsibilities, such as connecting a family with a support group or administering an event.
  • With service providers that support NFON’s operations, such as website services, Mailchimp, Google Forms, CanadaHelps, PayPal, and other technology or administrative providers.
  • When required by law, for example to comply with a Canada Revenue Agency audit of charitable records or a valid legal request.
  • With your explicit permission, such as when a family agrees to share its story, photograph, or testimonial publicly.

NFON is periodically approached by researchers and other organizations wishing to share research studies, surveys, or participant opportunities with the Neurofibromatosis community. NFON may review and choose to circulate information about appropriate opportunities to its community.

NFON does not provide researchers, study organizers, or other third parties with NFON member lists or member contact information for participant recruitment.

We do not sell or trade donor, member, volunteer, or program participant lists.

08 | Third-Party Donation Platforms

NFON’s Donate page currently offers several ways to donate:

  • CanadaHelps, which processes online donations through its own platform.
  • PayPal, which processes online donations through its own platform.
  • Direct e-transfer to info@nfon.ca, for donors who prefer to contribute directly to NFON.

CanadaHelps and PayPal are independent third-party services with their own privacy policies, data-handling practices, and security measures.

Depending on the platform and the choices made by the donor, NFON may receive information including a donor’s name, email address, mailing address, donation amount, and donor message. Some CanadaHelps donations may be anonymous.

NFON does not receive or store donors’ full payment card information from these platforms.

09 | Data Storage and Retention

NFON uses a combination of manual record-keeping and established third-party services to administer its activities.

Depending on the purpose, information may be maintained through internal records and spreadsheets, email systems, Mailchimp, Google Forms, donation platforms, and other service providers used by NFON. Third-party providers maintain information within their own systems and according to their own privacy and data-storage practices.

NF Family Camp registrations are currently collected through Google Forms. Information concerning children is submitted by a parent or guardian as part of the family’s registration rather than through a separate registration completed by the child.

For operational purposes, NFON may maintain a separate manual camp list containing limited information such as the family name and number of family members attending. Paper attendance records used at camp are shredded after camp.

NFON keeps personal information only as long as needed for the purpose it was collected, or as required by law. The Canada Revenue Agency requires registered charities to keep duplicate donation receipts for a minimum of two years from the end of the calendar year in which the donation was made, and to keep general financial records for six years. NFON applies the applicable CRA retention schedule to donor and financial records.

10 | How We Protect Your Information

NFON takes reasonable steps to protect the personal information we hold, including limiting access to board members, volunteers, and program organizers who need the information to carry out their responsibilities.

NFON also relies on established third-party platforms for functions such as payment processing, email communications, and online registration rather than handling every technical system independently.

No method of storage or transmission over the internet is completely secure, and we cannot guarantee absolute security.

11 | Your Rights and Choices

You can:

  • ask what personal information NFON holds about you;
  • ask us to correct inaccurate information;
  • withdraw consent to receive emails at any time, using the unsubscribe link in any email or by contacting us directly; and
  • ask us to delete your information, subject to records NFON is legally required to keep, such as donation receipts and other required financial or governance records.

To make any of these requests, contact us using the details in Section 14.

12 | Children’s Information

NFON’s programs, including the NF Family Camp Weekend, are built for families, and children may attend alongside a parent or guardian.

NFON does not knowingly ask children to independently provide personal information directly to NFON. Family Camp registrations are completed by a parent or guardian, and information about a child is supplied as part of the family registration rather than through a separate child registration.

Access to personal or health-related family information is limited to NFON volunteers or organizers who need it for legitimate program purposes.

13 | Changes to This Policy

We may update this policy from time to time, for example as our programs, website, technologies, service providers, or legal obligations change. When we make changes, we will update the date shown at the top of this policy. We encourage you to check back periodically.

14 | Contact Us

If you have a question about this policy, the personal information NFON holds about you, or a privacy-related request, contact:

Neurofibromatosis Ontario
The Neurofibromatosis Society of Ontario
Email: info@nfon.ca
Mailing Address: 135 Parsons Lane, Huntsville, Ontario P1H 2N5
CRA Registration Number: 119053775RR0001