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Ashish Kamat: Hello, everyone, and welcome to UroToday's Bladder Cancer Center of Excellence. I'm Ashish Kamat, Professor of Urologic Oncology in Houston, Texas, and it's a distinct pleasure to welcome once again to the forum Alex Filicevas, who's executive director of the World Bladder Cancer Patient Coalition.

Normally on this forum we have scientific talks, we have scientific discussions. Today, it's a little bit different, but it gives me immense pleasure to actually introduce this topic. This is the first Scientific Advisory Board that has been assembled by the World Bladder Cancer Patient Coalition, and this really sets off a global perspective. It's a global launch, it's a global Scientific Advisory Board, and I'm really excited to share this announcement with all of you.

And for that, Alex, I want you to share with us a little bit about the genesis of this idea, and then we'll chat a little bit after that. So, stage is yours.

Alex Filicevas: Thank you so much, Dr. Kamat, for this invitation and for the opportunity to talk about our first Scientific Advisory Board.

So just to kick us off a little bit, for those who may not be too familiar with the World Bladder Cancer Patient Coalition, it is a growing international organization uniting bladder cancer patient organizations from around the world. And we have worked already with 16 member organizations in 13 countries, when we started off with three about five years ago. So actually last year we celebrated just our fifth year anniversary. So it is actually quite special stepping into the next five years, that we bring in a closer connection also to the scientific community through the Scientific Advisory Board.

And so our work focuses really across the three core areas, since the very beginning. We are focused on fostering an international community of people affected by bladder cancer. So we're really looking to connect with bladder cancer patients, their families, who are looking to do more in terms of advocacy or support to help others. And there is a really growing opportunity for us to connect them with each other as well and provide a space for inspiration, for sharing practice in patient support and awareness, and even involvement in scientific opportunities. And so we provide that platform for them to connect. And one way of doing that is also our World Bladder Cancer Patient Forum that takes place every year.

We're also very focused on advocacy for access to the best possible bladder cancer information, diagnosis, care, and support. And we not only focus on doing that as a coalition ourselves, as an organization, but really focus on empowering and providing that capacity for bladder cancer patient groups who operate at national level to do that themselves, that they're equipped with the right tools and information and support that they need to do the best possible work in that space.

And of course, building alliances with all stakeholders that are relevant to our community, including healthcare professionals. And so that's why it's so important for us to continue these conversations on UroToday and having this platform here, but also involving our wonderful Scientific Advisory Board members from around the world to join us on that effort.

And so we have launched our first Scientific Advisory Board just very recently, a couple of weeks ago, very formally. And we've just been really honored and touched by the sheer interest shown by the experts in their respective fields, and across the world in their respective countries, but also globally recognized experts who have agreed to donate their time and expertise to contribute to the Scientific Advisory Board. And of course, Dr. Kamat, I'm so grateful from the behalf of our community that you have also agreed to chair the first board for the World Bladder Cancer Patient Coalition Scientific Advisory Board.

And you will see that we have very broad geographic representation, so it's really important for us that each region is represented. And we have 16 members of the Scientific Advisory Board who also come from different disciplines as well, so bringing in not only expertise from the specialty, but also the regional knowledge and the knowhow, as well as the regional knowledge and connections that they have in their countries nationally and across the region.

And so I think the list of what we could do with Scientific Advisory Board together in partnership over the coming years, I think it's endless, but I thought it would be quite nice to bring in just a few sort of ideas where we started. And this has been in the making and shaping internally with the World Bladder Cancer Patient Coalition and you, Dr. Kamat, as well for quite some time. And we see this as an opportunity to bridge scientific knowledge to our bladder cancer patient community, especially looking how swiftly now the science is evolving and practice-changing approaches and treatments are coming into space. We want to make sure that there is no delay in how we bring that knowledge into our community. Of course, providing scientific and medical guidance to World Bladder Cancer Patient Coalition initiatives and helping us empower the community with the knowledge and connections that they need to be in touch with the science and medical advances. And of course, I think as a platform in itself to provide a space for discussion on some regional and global medical and health policy issues that are affecting patients, and acting also as ambassadors within their communities, within their regions and countries themselves, to connect our growing World Bladder Cancer Patient community in that space.

So maybe just very briefly, in summary, World Bladder Cancer Patient Coalition, we are an international and growing bladder cancer patient community, uniting patients and the families in advocacy and support efforts in their own countries. We just, in June this year, 2025, established the first Scientific Advisory Board with an effort to bridge the knowledge between science and our patient community, and providing that space for dialogue, guidance, and collaborative scientific initiatives that support people affected by bladder cancer all around the world. So thank you so much for the opportunity to present this, and I look forward to our discussion now as well.

Ashish Kamat: So thanks so much, Alex, for providing that summary, for those that are listening in. It really is quite commendable what the World Bladder Cancer Patient Coalition has been able to do on a global scale. Now, I've been a big supporter of patient advocacy groups, BCAN in the US since its inception, of course our own MD Anderson organization. We have the International Bladder Cancer Group. But it really takes an organization such as yours to bring everybody together from a global perspective, because in developed countries where you and I live, people have resources, they have access, but in many parts of the world, they don't have access to that.

And some of the work that the World Bladder Cancer Patient Coalition has done, for example, with the global survey that was published a few years ago, the educational grassroot efforts that you have supported, it really helps open the eyes of not only patients but physicians across the globe as to the need for something like this. So again, it's my honor. I've worked with you for many years, but when you invited me to take part in this, I said, of course. I didn't even think twice. It's my honor to serve as the chair of the Scientific Advisory Board. And as you mentioned, Alex, our goals are vast, but if you had to highlight from your perspective, with all the work that you've done, everything you've seen, what would you say would be the top three next steps that you would like people to in some ways hold us accountable for?

Alex Filicevas: That's a very good question. So I'll probably put the community of the Scientific Advisory Board on the spot here. I think the first thing for us as a community is important that we create a close link between medical and scientific community, and in a more structured way, where you can continue to have a dialogue and conversation where we have a sort of going back and forth to each other about the science, about the research that we are doing, and that we can keep each other up to speed as distinct communities, but also serving the individual patients that we represent as WBCPC.

I would like also for us to work closely together so we can improve patient information supporting care around the globe. And this takes shape in... There are different needs, as you've mentioned, in different regions, and some are more fortunate than others in terms of how quickly the supports and information and care improvements come to them. And so I think this is where the opportunity is for the Scientific Advisory Board, bringing those different perspectives from their respective regions and their scientific and medical background, into helping us develop these resources, perhaps let's say patient information resources. That's the first thing that comes to my mind. But also how we can joint efforts to then work on the improvements in care and support that happens locally on the ground, which is the most important thing for patients.

And I would say lastly, the third thing would be to ensure that we prepare our community, and I think this is on the World Bladder Cancer Patient Coalition as itself, but I think Scientific Advisory Board plays a huge role in this. So that's why I would hope that we have that joint role to make sure that we prepare our community for what's coming, in terms of science and the medical advances which are shaping and changing the medical care for bladder cancer patients around the world, that they are aware, they're involved, and they are ready not only to inform patients and support them on this journey, but in many cases engage in advocacy to make sure that these advances don't leave anyone behind, and they reach patients in their communities as soon as possible.

Ashish Kamat: So Alex, it's almost like I gave you this question beforehand, but I didn't, and the way you highlighted the three key points, those are exactly things that I was going to highlight myself. So in some ways you stole my thunder, but I'm glad you did, because that shows that we're aligned in what we want to do.

The one thing I want to emphasize to everybody listening in is that we, as the Scientific Advisory Board, are here to listen from you as well and learn from you. We had to select X number of people to serve on the committee, because otherwise managing time zones and Zoom calendars would've been impossible. But we want to hear from every one of you. So reach out, we'll have the link on UroToday, the email address, reach out if you have ideas, if you have projects that you want us to consider. If you have anything that would help us as a community empower patients in your community, let us know, because that's why we exist. That's why we come together, it's to obviously help with research, education, trials, global efforts, work with guidelines, different organizations, but the common theme is to empower patients and their families to essentially get rid of bladder cancer the best that we can.
So with that, Alex, last words for our audience.

Alex Filicevas: I think I would just echo, Dr. Kamat, to what you just said, that yes, we have a group of people to lead this effort as Scientific Advisory Board, but we want everyone to be a part of this, both from the scientific and medical community, but also bringing in perspective from our side, from the patient community. And perhaps I would just touch on, as a hint on what's coming, that we are also looking to establish a more structured advisory board, also collecting patient perspectives, so having a patient advisory board of a similar structure. So you hear it first here. And so I think there will be a great opportunity for Scientific Advisory Board and the structured patient advisory board to collaborate together moving forward, too.

Ashish Kamat: Another excellent initiative, Alex. Kudos to you and the entire team for constantly thinking of ways to push the envelope, but very much needed. Thank you again for taking the time. Thank you for all of you for listening. And again, send us your thoughts, comments, anything we can do to help the global community.

Alex Filicevas: Thank you.