Written by Ryan Hull, RARE.Qc Student member
A single rare disease affects fewer than 1 in 2,000 people by definition, but together they affect nearly 700,000 Quebecers. Because of how rare their cases are, patients face unique challenges, including missing diagnoses or delays of several years, a lack of treatments, and a lack of solidarity. I’m Ryan, a student member of the Network to Advance Research on Rare Diseases in Quebec (RARE.Qc), and this cause is close to my heart because my family is affected by it: last August, I got to see firsthand how the people of Quebec felt about it.
Cycling solo on a 2,500-kilometre bike-camping tour over the summer of 2025, I stopped in local communities to offer benefit concerts of classical piano, where I gave talks about the cause. The five concerts (in Quebec City, Les Bergeronnes, Le Bic, Sherbrooke, and Howick) allowed me to raise awareness face to face. RARE.Qc played a central role in coordinating with the municipalities and churches that generously hosted the concerts, and in promoting the tour through its network. I also used these events to introduce two organizations dedicated to this cause in Quebec: the Quebec Coalition of Orphan Diseases (Regroupement québécois des maladies orphelines, RQMO) and RARE.Qc. These organizations remain little known to the public, even among affected families. After the concerts, I spoke with the families who came out, many of whom shared their personal struggles related to rare diseases.
Photo: Ryan’s bike tour itinerary
The response from Quebecers exceeded our expectations. The campaign was covered in newspapers, on television, and on the radio, and was supported by churches, arts presenters, and the communities that welcomed me with open arms. Over the 29 days the project lasted, I was able to connect with many affected families and raise $15,754 thanks to more than 100 donors. Beyond the funds raised, the most lasting impact of this tour remains the awareness it helped create: introducing rare diseases to the general public and highlighting the urgent need to advance research for the people and families affected.
Photo : Ryan Hull during one of his concerts during the 2025 bike tour
On behalf of the RARE.Qc community, we would like to extend our heartfelt thanks to Ryan and warmest congratulations for his outstanding contribution.
Media coverage : Télévision en Côte-Nord, McGill Reporter, Journal Le Manic, Quoi vivre Rimouski, Journal The Gleaner, Classic 107 Winnipeg
Sherbrooke Concert Recording: Link
To learn more about Ryan’s initiative or to get in touch with him, please contact him at the following address: ryan.h.hull@gmail.com