Keynote Speaker
Canada's Only Rare Disease Keynote Speaker at Scale
Lauren Pires lives with Central Core Disease, a rare neuromuscular disorder affecting fewer than 1 in 100,000 people worldwide. She has built the most visible rare disease advocacy platform in Canada — leading a national campaign that lit up 26 landmarks across 18 cities and earning recognition from EURORDIS, the world's leading rare disease patient organization.
Why Lauren
A rare disease speaker who has earned the platform
300 million people worldwide live with a rare disease. In Canada, that is roughly 1 in 12. Most have spent years searching for a diagnosis, navigating a medical system that has little to offer them, and explaining their condition to people who have never heard of it. They deserve advocates who speak from that same place.
Lauren Pires was born with Central Core Disease and wasn't formally diagnosed until age 21. She has about 33% of the physical strength of the average person. Not 33% less. Just 33%. For over 30 years, she navigated the world without language for what made her different, and without a single person in her life who shared her condition. When she began speaking publicly, people with Central Core Disease found her from Spain, Germany, and the United States. She now connects with a global community of approximately 1,500 people who share her diagnosis.
As Canada's first and only Invisible Disabilities Association Ambassador and the organizer of the Canadian #LightUpForRare campaign, Lauren has become the most recognized rare disease voice in the country. EURORDIS, the European Organisation for Rare Diseases, selected her as a face of the global Rare Disease Day campaign in 2024.
Learn About LaurenThe Campaign
What Lauren built for Rare Disease Day
The #LightUpForRare campaign is the most ambitious rare disease awareness initiative in Canadian history, coordinating with municipal governments, landmark operators, and media partners across the country.
Coverage included Breakfast Television, CityNews, and regional outlets across Canada. The campaign ran in partnership with the Canadian Organization for Rare Disorders (CORD).
What to Expect
What a rare disease keynote from Lauren delivers
The reality of rare disease, explained clearly
300 million people worldwide live with a rare disease, yet most audiences have never heard a firsthand account of what that life actually looks like. Lauren translates an experience most people have never encountered into something deeply relatable.
Built for Rare Disease Day and beyond
Rare Disease Day is February 28. Lauren books well in advance for advocacy events, medical conferences, patient organization gatherings, pharmaceutical events, and awareness campaigns timed to the day.
Global credibility, Canadian voice
Lauren's recognition by EURORDIS and CORD gives her rare disease keynotes a level of organizational credibility that most patient advocates don't carry. She is the rare speaker with both lived experience and a verified national platform.
The isolation of rare disease, named
Lauren grew up without a single person in her life who shared her condition. When she started speaking, people with Central Core Disease found her from three continents. She articulates the particular loneliness of rare disease in a way that resonates with patients, families, and the professionals who serve them.
Tied to the larger disability conversation
Lauren's rare disease work connects naturally to broader conversations about invisible disabilities, inclusion, and resilience. Organizations that book her for a rare disease keynote often find the content opens doors they didn't expect.
Media-verified credibility
Lauren's rare disease advocacy has been covered by Breakfast Television, CityNews, Newmarket Today, and Thorold Today. She knows how to carry the story to an audience that isn't already in the rare disease community.
What Clients Say
Hear it from the organizations themselves
Lauren visited our college group to give a virtual speech in honor of Rare Disease Month. Through her speech, she inspired our audience to think critically and reflect on their lived experiences through reflection exercises and discussion. Her presentation was interactive and engaging, even for a college audience. Her passion for advocacy and inspiration was evident. I would highly recommend her to other organizations looking for an eloquent and engaging guest speaker.
What a great talk for the International Day of Persons with Disabilities. A nice balance between sharing lived experience and weaving in moments of reflection for employees, to expand people's perspectives on disability inclusion and build respect and mutual understanding. Thank you to Lauren for taking the time to understand our needs and for being so responsive.
I had the privilege of hearing Lauren speak during Invisible Disabilities Week in October and she was fantastic. Her presentation was very informative and engaging. I would highly recommend her!
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