 Good choice, right? Welcome, everybody, and thank you all for being here. It is good to have everybody here. I want to especially appreciate the sufferers, as well as the representatives who have been active in supporting this bill. And I am proud to sign Bill 239, House Bill 239, which is Act 14 into law. And I want to thank Garrett Coyne, as well as his parents, Joe and Nancy, who could not be with us today, but without whom this legislation would not have been possible. As you know, Representative Topol heard the story of Garrett's battle with Barron's disease. And that's what started this off. She decided to act. She actually got a bill put together and got it passed unanimously in the Senate and the House. That's no mean feat. So congratulations on doing that. What House Bill 239 does is it establishes a rare disease advisory council consisting of the Secretaries of Health Human Services, Education, the Insurance Commissioner, members of the public, members from across the health care community to advise all of us, advise Pennsylvania on how we can best serve people with rare diseases in our commonwealth and to give rare disease patients in our state a stronger voice in their government. There are 1.2 million Pennsylvanians who suffer from rare disease. And there are over 7,000 of these rare diseases that affect 200,000 people or fewer across the United States. A majority of these diseases simply don't have a treatment. This bill helps us tackle this issue head on. It helps us give a voice to those who are fighting rare diseases, like Carly, and begins to improve care and results for those 1.2 million Pennsylvanians. The Rare Diseases Advisory Council will bring together people from all sectors of the health care industry, including state government, doctors, nurses, representatives from hospitals and health care providers to establish a report detailing how we can all work together to improve care for those with rare diseases. Again, one of the most important roles of government is to make sure that organizations, especially those that provide health care and other critical services are working effectively on behalf of every citizen of Pennsylvania, not just some, but every citizen. And this advisory council will help us reach that goal by shining a light on issues in our health care system that those with rare diseases face, pointing us to solutions to make the difficult road they travel maybe, and we hope, a little easier. Far too often, individuals with rare and unique diseases can feel lost because services are not tailored to their specific needs. We need to make sure that when a person is sick, no matter what their disease or how rare it is, that the patient has the best care available and that they can reach a high quality of life as they battle that disease. This advisory council will help us do that. It will focus directly on those diseases and ailments that are not often seen, and will help to make sure that we are doing all that we can to help patients suffering from those rare diseases. This council will provide a report to the House and Senate detailing what changes we need to make, I think within a year is the idea, and what standards we need to introduce to help our constituents who have been diagnosed with these rare diseases. Diseases like Batten's disease, diseases like Caroli disease, FOP, Heartenup disease, among others. And so I wanna thank Representative Topol for her work in getting this bill to my desk. I applaud her work and echo her cause, because we as a government need to do all that we can to give a voice to those who are fighting these rare disorders. It's my hope that the Rare Diseases Advisory Council will point us toward best practices and practical changes that we can make to ensure that healthcare systems work across the country, across Pennsylvania, no matter what healthcare problem people in Pennsylvania are facing. So again, thank you Representative Topol. Thank you to the Coyne family for their strong support and thank you to all of you for being here. Now, I'll take questions on this topic, then I'm gonna sign with Representative Topol and Caroli, we're gonna sit there and sign this bill into law and then I'll take off-topic questions and a gaggle over on the side. So are there any questions on this time? Yeah. If something comes up down the line, we'll take that. Yeah, Representative, do you wanna answer that question? I believe the council's gonna be looking at rare diseases broadly, not specifically. So it's the challenges that most, there's so many rare diseases, I think it would be possible to do that. So they're gonna be looking at the challenges in general that these patients face. Again, if you look at the nationally, as I said, there are 7,000 diseases that affect 200,000 or fewer people, that's considered technically rare diseases. How many of those 7,000 are affecting our 1.2 Pennsylvanians? I don't think any of us knows this point, but the council will list those diseases and try to make sure we're doing everything we can. Yes, Dennis. Can you clarify some of the challenges these people face that prompted you to wanna write this, that needed this bill to be written? Yeah, maybe, do you wanna talk about Garrett's particular problems, because that's what started this? It did. Garrett's father, he's my constituent, came in to talk to me about the challenges they faced. And government, as we talked about in other areas, often operates in silos. So to get a healthcare provider, get a diagnosis, treatment, educational challenges, sometimes they need special provisions for home care, nutrition needs, so to coordinate all that care and even in the interim, trying to find out or even diagnose what the issue is are extremely challenging. So those are some of the things that he talked to me in general. And then finding a pharmaceutical company or companies that were doing research in that area, just making those connections as well. These are folks that have very little hope when they finally get the diagnosis. So to connect with other people that are perhaps going through the same thing or people are working on that disease is really important to them. The disease that Garrett has is a rare disease that the cells in his body apparently are unable to eliminate waste. And so this builds up in the body and it has all kinds of consequences like as a visual problems is in a wheelchair I think right now. And there's just a lot of issues that Garrett is facing as a result of this rare disorder that's affecting, physically affecting his body. Any other questions? Yes. Under current law, if someone is diagnosed with a rare disease, is a hospital required to perform with the state of that disease? Under this law, you mean? No, under this law or existing laws. I don't know of any requirement. Do you know? I don't. There's not, okay. All right, I'm going to sign this into law and I'd be happy, proud to have Representative Topol next to me and Carly, my cousin Carly next to me.