Community
Patient Partners
Our patient partners bring lived experience with bronchiectasis and NTM to the heart of our research. Their perspectives shape how we design studies, communicate findings, and ensure our work remains meaningful to the people it serves.
Patient and public involvement is central to the CanBE-NTM Registry. By working alongside researchers from the very beginning, our patient partners help ensure that registry priorities reflect real-world needs—and that research outcomes translate to better care for the thousands of Canadians living with these conditions.
Meet Our Partners
Voices from the community
Esther Steinberg
Patient Partner — CanBE-NTM Registry
Diagnosed with bronchiectasis and NTM in 2001, Esther Steinberg founded the Canadian NTM patient community after encountering a critical lack of resources at the time of her own diagnosis. She spent years learning from clinicians and pharmaceutical companies to help newly diagnosed patients better understand their conditions and manage side effects—work that has grown into a thriving support group of approximately 200 Canadian patients who come together regularly to learn from and support one another.
Isabelle LeClerc
Patient Partner — CanBE-NTM Registry
Isabelle LeClerc is a Registered Nurse with 39 years of experience in Ottawa, specializing in chronic disease self-management in an interdisciplinary academic primary care setting. She is a regular presenter at the Canadian Bronchiectasis-NTM Education & Support Group and has shared her expertise at World Bronchiectasis Conferences across Europe and North America, including as a panel presenter at the 2018 World Bronchiectasis Conference in Washington, DC.
Perspectives
What participants say
For many painful years I watched my mom struggle with a fairly invisible disease — knowing that it felt like she was breathing through a straw and severely limiting her physical abilities and experiences. We so often take health for granted and I appreciate the courage of people who are living through horrible coughing spells, shortness of breath, dealing with yucky sputum and weird looks from people who don't know why you sound gross when you cough, and fearing basic colds and coughs that others can easily navigate... it is very heartbreaking to watch and you often feel helpless to support those living with bronchiectasis. I hope that Dr. Thornton and her team's research helps raise awareness and treatment to help people living through this difficult diagnosis.
— Alexis Tjart, daughter of a bronchiectasis patient
Get Involved
Interested in becoming a patient partner?
We are always looking to grow our patient partner community. If you have lived experience with bronchiectasis or NTM and are interested in contributing to research, we'd love to hear from you.
Get in Touch