Today was a milestone for Ontario’s rare disease community.
The Ontario Rare Action Group’s first Voices for Rare Advocacy Breakfast at Queen’s Park brought together more than 80 patients, caregivers and supporters from across Ontario who shared powerful stories and a unified message: Ontario’s 1.3 million rare disease patients deserve a provincial strategy that meets their needs.
We were honoured to have so many MPPs join us, including four incredible speakers representing each political party: Brian Saunderson (Simcoe–Grey), France Gélinas (Nickel Belt), Adil Shamji (Don Valley East) and Mike Schreiner (Guelph). Their willingness to listen and engage gives our community real hope.
A heartfelt thank you to everyone who joined us this morning. Your presence made this day unforgettable. Deep gratitude to Alexion Pharmaceuticals, Inc. and Novartis Canada for sponsoring today’s event, and to 3Sixty Public Affairs and Global Public Affairs for their tremendous support in helping us bring this event to life.
A very special acknowledgment to two special guests - Durhane Wong-Rieger from Canadian Organization for Rare Disorders and Christine Elliott (former Minister of Health) — two long standing champions whose leadership has moved rare disease policy forward in Ontario and across Canada.
And our deepest thanks to the many patients, caregivers, and supporters who came to Queen’s Park today. Thank you for sharing your stories. Your voices are powerful. Too many names to mention but please know that we so appreciate you getting up so early and travelling so far. You made this morning special.
Together, we are stronger. And together, we can drive the change that is so urgently needed. This is what drives the creation of the newly formed Ontario Rare Action Group – to unite and amplify rare disease voices across Ontario.
This is just the beginning. We will continue building this movement of 1.3 million Ontarians.
Next year, we may need a bigger room. Keep April 2027 open for our 2nd annual Voices for Rare Advocacy Breakfast. Details coming soon!
