First of all, a huge thanks to the committee for having this very special panel and certainly, for inviting us again. We are really pleased that you're undertaking, for the first time, a focused look at Canadians with rare disorders. This is a huge asset to us.
I especially want to thank Ben Lobb—who I hope is somewhere around here—and also ex officio member John Oliver for their leadership within this caucus to make this study happen.
To those of you who are health professionals here, and I know some of you are, we also would like to build on what you've already heard from your constituencies and your patients as well around the first-hand impact of rare diseases.
Certainly, we're very pleased with the way you've asked the question. What are the challenges and barriers, but also, what are some of the solutions? I think that's what we all really want to get to.
We very much appreciated hearing the Health Canada presentation as well. We'll add a little bit to what you've heard and to some of the very cogent questions that you folks raised with that.
This is, in fact, as you have seriously addressed here, a long-neglected part of Canada's health care system. I think, as you've already heard, and I don't need to reiterate, rare diseases affect nearly three million Canadians directly, and that's not including family members. Two-thirds of those are children. Most of these diseases are disabling, and that's why they're so important. They're lifelong conditions, and many of them are life-threatening unless we diagnose them and can intervene quickly.
The good news, of course, is that we are doing a much better job in terms of diagnosis. There are, in fact, many more treatments coming. We just did another survey this past June, and we will be able to break down the results for you to look at, but about 80% of people with rare diseases who responded to our survey were clear. They have challenges getting access to the medicines they need. I think Maureen, who appeared with me last time, is going to be talking with you about her challenges of getting diagnosed and treated for her rare condition.
At CORD, we've been working for many years to address these challenges. One of the things that we did in the context of this was the launch in 2015 of Canada's rare disease strategy, which we were very happy to do here at Parliament in order to have the recognition of the members of Parliament in support of that launch.
One of the key goals—I'm not expecting you to remember, but I will reiterate for you—is, in fact, access to promising therapies. We're very pleased to be here today to talk to you about some of the challenges that patients face in accessing those therapies and about some of our recommendations, especially how the federal government can help improve access.
Before I get started, I will turn it over to Maureen Smith. Not only is Maureen a patient, but she has also been for many years the secretary of the board for CORD. She's going to share her story.