Thank you very much.
My name is Durhane Wong-Rieger, and I am the president of the Canadian Organization for Rare Disorders. Presenting with me today will be Maureen Smith, the secretary of our board.
On behalf of the three million Canadians who suffer from a rare disorder, we want to thank you for the invitation to share our perspectives on national pharmacare with a focus on rare diseases. We're mainly going to talk about the regulatory aspects, and about access gaps for rare disease patients, and some of the key aspects of a national pharmacare program.
Before we start, I'd like to give you a brief background on the Canadian Organization for Rare Disorders, also known as CORD, and to share with you a bit of our personal experiences related to rare diseases.
CORD is a registered charity. It serves as an umbrella organization for about a hundred rare disease groups in Canada. Most of these groups are kitchen table organizations run by volunteers. Most of them are run by people who are not only affected patients or parents, but also hold down other jobs in order to pay the rent. I want to stress this point in order to correct some of the erroneous impressions, which have been fuelled by some of the media outlets and by critics, that these volunteer organizations are heavily subsidized by the pharmaceutical industry. These allegations are not only unfair and untrue, they're harmful and hurtful to the patients and families who donate thousands of hours and thousands of their own dollars to running these groups for their cause.
In the same regard, at CORD we are even more challenged in terms of resources because we don't want to fundraise among our member groups. We can't do the fundraising there. Unlike academic institutions, we can't even apply for a grants from institutes like CHR, even though we at CORD contribute to the research programs.
Our two main sources of funds are educational programs that we run and our educational conferences and grants that we get. Most of them are provided by the pharmaceutical companies, but to put it in perspective, CORD is a lean organization. We only have two part-time staff, and I'm one of them. This is CORD, and we rely heavily on volunteers like Maureen Smith in order to do our work.
Our recent efforts, as some of you know, have included implementing Canada's rare disease strategy, because rare disease is about a lot more than just drugs. This strategy was developed and led by CORD, but we had input from patients, clinicians, researchers, policy leaders, and the private sector. We have five key goals: improving early detection and prevention, because if we can diagnose it early then we can prevent many of the harmful effects; providing timely, equitable, and evidence-informed care; enhancing community support at all levels; providing sustainable access to promising therapies; and promoting innovative research.
As an aside, I'd like to thank all the members of Parliament who wore the yellow scarves for the launch of our strategy for Rare Disease Day.
I don't usually talk about my personal experiences, but I have two children, both of whom were born with rare diseases. I have a husband who has a genetic cardiovascular disease called familial hyperglycemia. He also has Parkinson's disease, and he has a rare motility disorder.
I am a psychologist by training and taught at a university for almost 30 years. During that time, I was doing a lot of patient advocacy on the side. It was my experience working as a volunteer with the Hemophilia Society during the tainted blood crisis that convinced me that I could probably do more good by leaving the university and focusing on patient advocacy full time. I imagine a lot of you can relate to that, because I'm sure you have left other careers to have a bigger impact as a public official.
I'm going to turn it over to Maureen, our board secretary and a board member, to share her story.