Honourable senators, I rise today in the Senate Chamber to highlight that today, February 29, is Rare Disease Day. A rare disease is defined as a condition affecting fewer than 1 in 2,000 people.

I’d like to begin by sharing just a few statistics. About 1 in 12 Canadians are affected by a rare disease — two thirds of them are children. Right now, only 60% of treatments for rare disorders make it into Canada, and most of them get approved up to six years later here than in the U.S. and Europe. About 80% of rare diseases are caused by genetic changes, and 25% of children with a rare disease will not live to their tenth birthday.

Rare Disease Day serves as a poignant reminder of the over 300 million individuals worldwide and 3 million Canadians who live with a rare disease.

This day is not just about raising awareness. It’s about fostering understanding, support and hope for those living with these often misunderstood and overlooked conditions.

On June 4, 2021, we welcomed our third grandson, Rowan Cameron Black, into our family. While Rowan’s birth was a week earlier than expected, he arrived into the world a beautiful baby boy. However, we soon discovered that he was dealing with frequent and serious seizures while still at Guelph General Hospital. We would later learn that this was one of the first signs of SLC13A5 epilepsy.

This was the first time the Black family had ever dealt with complications during the birth of a child or epilepsy itself, and, as I’m sure many of you know, neither is an easy thing to handle. SLC13A5 is an extremely rare form of epilepsy. In fact, there are currently fewer than five individuals in Canada who have been officially diagnosed with this relatively newly discovered condition.

While Rowan has had countless seizures, he has also received excellent care from the many wonderful medical professionals who have attended to him. As an aside, we had a milestone this week: Rowan stood under his own steam for over 30 seconds.

Honourable colleagues, Rowan’s story is only one of many that deserve our attention and support. Despite the countless challenges they face, individuals with rare diseases and their parents demonstrate remarkable strength, resilience and courage in navigating their unique journeys. Their stories of perseverance and determination inspire others to keep fighting — even in the face of adversity.

I would like to highlight that today is the Canadian Organization for Rare Disorders, or CORD, Rare Disease Day 2024 Summit, which is happening here in Ottawa. CORD is Canada’s national network for organizations representing those with rare disorders. It provides a common voice to advocate for health policy and a health care system that works for all.

CORD is celebrating several achievements this year, including the launch of Canada’s first-ever Rare Disease Network, the first anniversary of Canada’s first national Rare Disease Strategy and the first year that patients could access an unprecedented number of drugs to treat rare diseases.

In closing, let us use Rare Disease Day as an opportunity to reaffirm our commitment to supporting individuals and families affected by rare diseases like SLC13A5. Together we can make a difference and ensure that no one faces these challenges alone. Thank you, honourable colleagues, for listening.

Thank you. Meegwetch.