Primary immunodeficiency disorders are very rare and misunderstood. That means people with chronic illness and exhaustion often go undiagnosed for years. Life with PI can be isolating and lonely, but we are not alone.
Who We Are
ImmUnity Canada is a not-for-profit charitable organization that provides a community for people and families impacted by primary immunodeficiency. We advocate for education, research, and support for PI patients. Together, we can give all Canadians with PI access to the resources they need to thrive.
ImmUnity Canada was founded in 1997 as the Canadian Immunodeficiency Patient Organization. We changed our name in 2022 to better reflect the work we do today!
Leadership and Governance
Please visit our Leadership and Governance page for the following information:
- Strategic Plan and Annual Report
- Board of Directors
- Medical Science Advisory Committee
What We Do
We provide a community for people with primary immunodeficiencies. We gather and share information and resources that help patients and their families. Our organization brings members together through events and networking, reducing isolation and loneliness. We want all Canadians with PI to know that they are not alone.
We fund research that improves the understanding and treatment of primary immunodeficiency. In addition, we educate healthcare professionals about PI disorders, improving diagnosis and patient health outcomes. Our organization also provides information and opportunities for people to learn about specific disease types and life management.
We lead advocacy initiatives at the local, provincial and federal levels. We aim to protect and broaden the rights of PI patients and influence policy decisions that impact our members. We also work to improve awareness of PI among the general public, increasing understanding and support for issues that affect patients with primary immunodeficiency.
ImmUnity Canada provides education, support, advocacy, community-building and research for people impacted by primary immunodeficiency. Through this work, we empower people to define their lives, take control of their health and advocate for themselves. We want every Canadian with PI to thrive and live well.
Whitney Ayoub Goulstone (she/her)
Whitney has been at the helm of ImmUnity Canada since 2014 and lends a strong personal voice to the organization and our mission. With over a decade of working in advocacy, she cares deeply for the patient community.
David Josey (he/him)
David has worked to plan and design programs based on the needs of community members for over a decade. He enjoys travel and the great outdoors.
Fiona Coyle (she/her)
Project and Volunteer Coordinator
Fiona has a background in social science research, community engagement and working within the rare disorders community. She helps implement our strategic plan and works with volunteers to ImmUnity Canada’s role for its members. Fiona enjoys hiking, five rhythms dancing, African drumming, learning the clarinet and solving cryptic crosswords.
Elizabeth Wilson (any/all)
Elizabeth supports our team and members with events, meetings, travel, and much more. She also creates and manages our website and social media content! Outside of the office, Elizabeth can usually be found out on the lake, where she coaches local youth and adults of all skill levels in rowing.
What We Stand For
We empower Canadians impacted by immunodeficiency disorders to live well through education, support, advocacy, community-building, and research.
All Canadians with immunodeficiency disorders have access to the resources they need to thrive.
In the 1990s, a Canadian with primary immunodeficiency (PI) wanting to connect with other patients found that a national organization representing PI didn’t exist. So they made one.
ImmUnity Canada was founded in 1997 with help from the International Patient Organization for Primary Immunodeficiency (IPOPI). Initially known as the Canadian Immunodeficiency Patient Organization (CIPO), we invited patients and caregivers across the country to join and connect with fellow patients.
Early on, ImmUnity Canada (then CIPO) joined the Network for Rare Blood Disorders Organization (NRBDO). The pan-Canadian coalition of patient organizations assists each other in governance and best practices. The NRBDO was vital in helping ImmUnity Canada establish by-laws and policies in our transition from non-profit to charitable status.
Throughout our first 15 years, a volunteer board of directors led ImmUnity Canada with chapter volunteers overseeing regional work. As our organization’s mandate grew, in 2014, we hired our first Executive Director, Whitney Goulstone.
In October 2022, the Canadian Immunodeficiency Patient Organization (CIPO) unveiled its new name, ImmUnity Canada. But while our name has changed, our purpose is still the same. Each day, we work to empower Canadians impacted by immunodeficiency disorders to live well through education, support, advocacy, community-building, and research.
ImmUnity Canada started modestly as a volunteer-run organization with patients and families nationwide giving their time to educate others and promote awareness of primary immunodeficiencies. Today, our volunteers and members continue to be the lifeblood of our organization and community.
From the beginning, one message rings louder than the rest; you are not alone.
ImmUnity Canada works with other organizations and corporate partners to help us achieve our vision for primary immunodeficiency patients. Our community partners are pivotal to our advocacy efforts, and our corporate partners provide critical program funding.