Unlocking Trust and Rare Diseases with Wes Michael

* Website
* LinkedIn
* Instagram
* Facebook

Timestamps:
00:00:00 – Intro & Highlights
00:04:34 – Rare Disease Day and Why This Conversation Matters
00:05:04 – The 12-Year Cycle: Why Wes Chose to Make a Big Change
00:07:41 – Working with Pharma: Where Patient Insight Fits
00:08:19 – Paying Patients for Their Time (and Why That’s Respect)
00:09:35 – Surveys, Interviews, and Capturing the Real Story
00:13:26 – Turning Lived Experience into Useful Data and Decisions
00:17:22 – Caregivers: The Missing Piece Most People Overlook
00:23:59 – Lightning Round: Trust Killers, Hiring Lessons, Keeping Promises
00:32:20 – Advocacy, What’s Next, and Wrap-Up

Wes Michael (00:02.00)
People love to tell their story, right? They’re like, when we ask them why they do it, that’s the first thing. Oh my God, somebody cares. My family is tired of hearing me talk about it. Maybe I can help others. Even if it doesn’t help me, I’ll help others coming down the road with the same disease or condition.

I can’t see what’s going to happen down the road. Companies can make promises, but if the market changes, they’ll have to do what they have to do. But if I put it in the best possible hands, the likelihood of good things happening are much better than if I put it in somebody I’m not quite feeling so good about.

Skot Waldron (00:36.00)
When I’m not hosting Unlocked, I’m speaking at events all over the world. I’m helping leaders and I’m helping teams communicate better. I’m helping them build trust faster and actually enjoy working together. I’ve spoken for companies like The Home Depot. I’ve spoken at national architectural firms. I’ve spoken for pharmaceutical company offsites. I’ve spoken at associations, you name it.

With 99% of attendees of all those events, over 1800 people have reviewed me at this point. 99% of them saying they got some value. That’s pretty awesome. Even the caterers have thanked me. And if they are thanking me and they’ve heard a lot of talks and they’re busy doing their jobs, that’s saying something. If you’re an event planner looking for a speaker who’s really easy to work with, trust me, I want to be the last thing you’re worried about on event day. I’m going to take care of you. And who actually delivers value for your audience that they are going to use on Monday morning when they return to the office, then let’s talk.

If you have been listening to this show for the past, I don’t, for the past 4 and a half years-ish, whatever we are at right now. I don’t remember. But if you’ve been listening to the show, you know, every year around this time, I have somebody from Rare Patient Voice on the show. And today I have the founder, Wes Michael, on the show. And you’re going to hear a little bit about his journey. You’re going to hear some big news that just recently happened with him and Rare Patient Voice, and I’m excited for them for that.

And you’re going to hear a little bit about trust because what they do at Rare Patient Voice is has everything to do with trust and the things they do for their patients, but also the things they do for the companies that are hiring them to do what they do. The thing the role that trust has played when Wes has been building this company and how it’s led to where he is now.

So, trust is going to be a big part of what we talk about intermingling this idea of rare patient or rare disease and what that has to do with anything. And so, with rare disease day coming up at the last day of February. I hope that you’ll take some of this to heart and really think about how you can contribute. Do you know someone with a rare disease? Do you yourself have a rare disease? Do you just want to contribute to the cause? Rare Patient Voice is a way to do that. And they have a really brilliant way and a good heart behind doing all of it.

So, without further ado, let me introduce you to Wes. Wes founded Rare Patient Voice in 2013 to provide patients a chance to share their voice and research. He’s been in healthcare research since 1998, and in market research for over 40 years. And that’s why he was the man to start this company and to grow it. And he’s the one that’s going to deliver the goods now. Here we go.

(03:48.00)
Wes, it’s good to see you again, man. It’s been a while.

Wes Michael (03:51.00)
Yeah, Skot, always good to see you.

Skot Waldron (03:53.00)
Yeah, so I usually have Pam on the show to talk about Rare Disease Day.

Wes Michael (04:02.00)
You got me instead.

Skot Waldron (04:03.00)
I know I think Pam just got sick of seeing me. I think she’s just like, you know what Wes? I’m tired of Skot. You’re just going to have to pick it up for me. How do you feel about that?

Wes Michael (04:12.00)
I think, again, some people have to work harder than others, so I’m happy to fill in for the people that are hardworking.

Skot Waldron (04:20.00)
There you go. There you go. Speaking of hardworking, you guys just sold to another partner that is a good opportunity for you and the company and Rare Patient Voice and what y’all have been doing. Tell me about that.

Wes Michael (04:36.00)
Yeah, it’s been 12 and a half years since I started Rare Patient Voice, and I look back and everything I do is in 12-year cycles. You know, go to school for 12 years. I was with one company of 12 years, another company 12 years. Now it’s been 12 years. So, it’s time for me to look at something else. And we had a lot of very good opportunities. Our first priority was what can we do to make sure our patients are treated well? Second priority was what can we make sure all the employees are treated well?

And we were really fortunate to find the company in Canova and some of their sister company or their son and daughter companies, whatever you want to call their companies, have been clients of ours from the very beginning. So, we know them well and they know us well. So, this is not, there’s no surprises here and they have the highest integrity. So, this is a good fit and we’ve already, it’s been a few weeks, and we already feel that way. It feels like a great thing. It will help us do more with the patients and help them really be able to do research across all of healthcare professionals as well as patients. So, it’s a perfect way to learn all about what companies need to know when they’re developing treatments.

Skot Waldron (05:47.00)
That’s amazing. I’ve had the opportunity and privilege to work with you and some of your people. And I see the heart; I hear the heart and the work that you do. Yes, we need to make money, but the impact you’re making on the community and on just rare disease in general is really cool. There needs to be more work done in this space and you all providing quite a platform to do that.

Wes Michael (06:18.00)
Yeah, it reminds me of my grandmother, who was a Quaker, and she still said, how is thee, and things like that. She said, our ancestors, they came to do good, and they did well, meaning you can do both, right?

Skot Waldron (06:32.00)
I like that. That’s good. I like that a lot. I mean, you built a company around giving patients a voice in research, right? So, first of all, tell me how that’s done.

Wes Michael (06:47.00)
It’s actually very simple. So, we have all these folks that have signed up with us, and they’ve told us what disease they have and that kind of thing. And companies come to us. And usually, it’s a roundabout way. If you’re a medical device company, if you’re a biotech company or a pharmaceutical company, you need to hear from patients, right? Hey, wait a minute, do they understand what we’re offering? What do they like about it? What don’t they? Will they ask their doctor? Can they use our website? All the questions you need to ask. They figure out a research program, and they work with a company that’ll help them. And then they go, wait a minute, how do we find the patients? So that company comes to us, and we say, oh, we have patients with hemophilia or lupus or MS or whatever it might be. And we’ll send an email and say, hey, we have something you might be interested in.

And so, people are interested, they click on it. And then we reward people, we reward them by paying them $120 per hour of their time. So, people love to tell their story, right? They’re like, when we ask them why they do it, that’s the first thing. Oh my God, somebody cares. My family is tired of hearing me talk about it. Maybe I can help others. Even if it doesn’t help me, I’ll help others coming down the road with the same disease or condition. And, oh by the way, money’s nice too. And we hear about the holidays, right? Oh thank God, you helped me buy a few more presents and things like that.

So, it’s really a win-win. Nobody loses in this deal is my favorite thing. Patients love that somebody cares about their opinion and they get paid. Our clients are like, oh my God, we can get this, the answers we want. You already have the people there. And we love it too because it keeps our staff employed and people pay us for that. And we pay, you know, so what’s nothing to like.

Skot Waldron (06:28.00)
That’s amazing. I love the model of like the three parties that benefit all from this thing. It’s not like one makes out better than the other. It’s like everybody’s getting something out of it. I mean, you’ve paid out over, you know, $18 million to participants to produce. I mean, $120 an hour is no joke. Like I mean, I’ll see like surveys that come across and it’s like, hey, this one will pay you $2 for 60 minutes every time.

Wes Michael (08:58.00)
You have to accumulate points over the longest time to get enough to buy like a nail file or something.

Skot Waldron (09:04.00)
Nail file. Well, I know it better be a really nice nail file. I mean. Okay, tell me this. Why do you think patient trust is so fragile though, in the healthcare and healthcare research? What do a lot of companies get wrong about earning that trust?

Wes Michael (09:22.00)
You know, I think a lot of them are more more thinking, wait a minute, we got to talk to patients, but they’re checking a box. I mean, yeah, you got to check your boxes, but it’s not about checking a box. It’s about really listening. And people can tell whether you’re taking them seriously, right? They can tell whether it’s like, yeah, okay. They can tell, wait a minute, tell me more. What does that mean? How can we work with that? Can we come back to you? Can we talk to you more? You know when people are serious about it, right?

And so that’s what they’re doing right and they’re doing wrong if they’re just checking a box and moving on or talking to them after they’ve made a decision just to say, well, we didn’t talk to people. No, they don’t want to be talked to after you made the decision. They want to have input into your decision. It’s so important. A guy had told me many, many years ago, I thought it was obvious at the time, but no, it’s important stuff. He said people support what they help create. So, you got to give them a hand in creating this stuff and then they’ll support it.

People don’t have to force down their throat. Let them do it. And guess what? You’ll learn. You’ll learn what they really need. And it’ll be better for your business, your treatment, your product, your service, whatever it is that you’re building for the patient.

Skot Waldron (10:35.00)
I love that phrase. They support what they help create. I mean, I’ve tried to say it in many other ways. But that way is really cool. And I’m going to steal it. That’s really, really smart. Because I always talk about the idea of autonomy and how people, if they can feel like there’s some autonomy in the thing. And in fact, I was just speaking to a leader yesterday and they were coming to me with an issue that they had with a particular employee.

And like how to address this and I’m to put them on a PIP and then I’m going to tell them what’s going on and then we’re going to you know and then I’m going to tell them the guidelines of what this thing is and then I was just going, okay so you’re going to sit them down and you’re just going to tell them all the stuff, right.

Wes Michael (11:17.00)
Right. You must do this. You must do that. And somebody told me years ago, if you’re, what is it? If it’s make or break, they’re always setting you up to break. Not to make.

Skot Waldron (11:27.00)
And what it’s doing is it’s creating stress on that side, right? I mean, if you, so back on this, they support what they help create.

Wes Michael (11:38.00)
Yeah.

Skot Waldron (11:39.00)
If I can help create, I’m not saying don’t put them on a PIP.

Wes Michael (11:42.00)
What ideas do you have to make this situation better?

Skot Waldron (11:46.00)
Yes. Amen. And that’s where it’s like the collaborative, the autonomy piece where if they can help create the situation, the guidelines, the expectations and shape it with you, they’re going to feel much more bought into it than just like slamming a hammer down on them and like.

Wes Michael (12:02.00)
And we find that even just in not necessarily in a negative situation like bad performance, but our staff and you know, you’ve met a lot of our folks, they’ll come with an idea. And I love that because I want it’s probably something I didn’t think of or I might think in my mind, I have a slightly better way of doing it, but it’s like, no, no, no, no, they’re going to make this work because they came up with it and, let them run with it. And it’s amazing because people do anything to make their own ideas work.

So, it’s like, go for it. It’s like you just have to take a little backseat and have a little faith and it’s paid off a million times.

Skot Waldron (12:40.00)
I mean, trust is so crucial in the work you do. I mean, with people sharing personal information and, you know, patients coming to you and trusting that you’re going to do the right thing with their data and information that they’re going to get out of it, what they put into it and everything. I mean, you’re asking patients often with rare serious conditions to share really deep information about themselves.

And so, what is, I mean, you’ve been able to build some trust with this network. What are some of the first moves that signal to them respect, like, hey, Rare Patient Voice respects who I am instead of extraction. Like, you’re trying to just get something out of me.

Wes Michael (13:27.00)
Yeah, yeah. Well, I mean, it’s funny because I like to tell people at the beginning through, we’re not in this for the quick hit, the quick buck, whatever. This is long term. If you’re not comfortable, take your time and get comfortable because the first thing that gets you nervous, like when Tony’s son will sell you something right. And they say, and you need to decide by tonight or you get a discount. Don’t you hate that? So, we don’t, my daughter, when I first was doing this, we got the patient events and I remember going with my daughter in Albuquerque.

Our walk was in the Saturday morning and for the rest of the weekend we could tour around. And so, I’m standing up talking to these patients and doing it. And she said, Dad, it was all 12 years old, “Dad, I think you’re a little too much in people’s face.” And you know, I said, you know, I don’t want to be, so I backed off a little bit. It’s like, you know, we’re not attacking people. Let them come to you, talk to them.

And then the other thing is little by little, you do, this is pretty obvious stuff, but hey, you do what you promise. I don’t know how many people said we would give people a gift card for signing up and people go, well, you actually did it. I just thought you, you know, people don’t assume it or people email or call with a complaint or a suggestion or a question or a comment, right? They’re assuming, cause how does that work for you all the time, right? It goes in some black hole. You never hear anything. You don’t know what’s going on.

A real person calls them back. It’s like, oh, I remember getting an email from a guy who was F this and F that, all these problems and stuff. And I wrote back and said, hold on, first of all, you don’t need to talk to me like that. Second of all, we actually want to help you solve your problem. He did a complete 180. He was like, I didn’t think anybody would read it. And we became best friends. So, I love to see that because just show people a little respect and then they’ll give it to you. And show them that you’re listening. It’s not going to a black hole. You’re not forgetting about them. You’re real people.

One of our guys, Kirk, we’re real people. I’ll get on the phone with you. Our business model is not to make people upset. So, let’s figure this out.

Skot Waldron (15:33.00)
Yeah, I hope that’s not your business model. I mean, in a trust-based business like yours, I mean, I think it’s one of the cool thing I like or learned about your business was your connection to the rare disease community and then, you know, serving those individuals with rare disease and then hiring some of them. I mean, that shows trust when number one on their side to want to be involved in the cause, but on your side to bring individuals in to help empathize with the community and to build a bridge there. Tell me about that.

Wes Michael (16:17.00)
Yeah, and it’s funny because I wasn’t smart enough to plan any of that. It just happened where, you know, I’d be out at a patient event and then somebody would say, “how can I help you or what can we do?” And then I say, “hey, wait a minute. You’re in Chicago or you’re in Denver. Hey, you can represent us at these events because I don’t need to be flying out with my kids. I can’t go to every event in the country.” So, we started with that and who better than a patient or a caregiver because I go to the events and I love, I still do it. I love to go to these events, but I give them the rational reasons, right? Well, it helps products and services and it’s confidential and you get paid, which is all fine.

But they connect emotionally. “Hey, I’m a patient.” “I do this. You should do it too. My kid has this disease.” They developed such a bond. And so, we started with that. So, folks part time would be working in their cities and do three or four events a year. We wouldn’t have to fly to them. And then over time, some of those would be interested in full time. And we would be growing. And we would need full time. And we’d say, boy, that person has a lot on the ball. And it worked. We’d say, “hey, do you want to be a project manager?”

And what’s better than somebody running projects that one knows the disease the community because they’ve been there then they see the flip side and they work with the clients, and they can tell the client. Wait a minute. This person’s had a flare-up. They’re going to miss the interview I know you hate when people missing an interview, and you know, but these things happen. So, it really worked out so well, I call it it’s almost like an internship, you know where, I always love internships because people work and not unpaid. What’s this deal about unpaid? Come on, pay people.

They work and they get to know your company; you get to know them. It’s like, it’s much better than anybody can come into a job interview and be very glib and get it and then they don’t work out. But when you’ve worked with somebody over time, you know it, right? And so, it’s worked out so well. And we’ve grown us team and so many have connections to all these different disease communities.

And then when we have an opening, what happens? They bring in their friends, their neighbors, their other compatriots. And you wouldn’t want to bring somebody into a company you didn’t like, right? And you wouldn’t want to bring a crummy person into a company that you work for, right? So, it’s a real win-win. They’ve done it. So again, I didn’t plan any of that, but it worked out so well. We have hardly any turnover because these people come and they’re terrific. And we love them. And they love to work with us.

Skot Waldron (18:43.00)
When you, I want to take this because you’ve hired just people over the course of this 12 years and you’ve grown from you know, you starting this thing into this company of employees and that have a like-minded mission and what they’re trying to accomplish and feel like a heart and a pulled for this thing, but also the practicality of this thing and what you’re trying to do and eventually selling like you’ve done.

But I honestly, I think about it sometimes and I go, okay, a small company like yours, when you sell a company, uncertainty, there has to be some level of uncertainty within your groups. And I see this a lot in whether you’re a big corporation or a small one, whatever, I see uncertainty happen all the time. And you’re about trust here, right? Not just on the patient side, but your employee side. How do you bring your employees to a steady place without pretending that everything’s going to be the exact same as it always has been everybody like going in and saying, “hey y’all, nothing’s going to change.” Like, I don’t know if that’s ever real.

Wes Michael (19:54.00)
Right. Because obviously something has to change, right? So, you know, and people do get very nervous and that was my biggest concern going in. How did I do that? So, I mean, over time, first I was working on this and then I brought in my two like my right hand and left hand and then when it got to a certain point, our leadership, but I didn’t want to tell everybody because it’s not a done deal. You can’t, you know, it’s like when the house isn’t sold until sold.

And I was worried it would leak and then I don’t want to lie to people, but it worked out well. But I like it too, both my kids, they’re 23 and 24 now, but we adopted them. And think of the birth, and we met the birth moms and stuff. Think of that as birth mom. You want the best for your kid. You can’t predict, you know, how do you know who’s the best? Well, you just try to put them in the best situation and the odds, more likely good things will happen, right?

And so, the same thing this is the company was my baby. I remember people would come to me when it was two or three years old. Like, I’m not selling this company. It’s my baby. She’s a toddler. We got to keep, keep, keep, keep, keep moving on. But when I came to it, I said, same thing. I can’t see what’s going to happen down the road. Companies can make promises, but if the market changes, they’ll have to do what they have to do. But if I put it in the best possible hands, the likelihood of good things happening are much better than if I put it in somebody I’m not quite feeling so good about.

And I told, that’s what I told the employees is like, look, I’m looking out for you guys when we do it. And then when we had it, I think they all had a feeling of relief of who it is. And the best thing is in the first few weeks of this been a lot of meetings, people learn and the canoe has done a wonderful job of getting people over some of that. Here’s what we do. Here’s what’s going to happen. Here’s how we do that. But yeah, there is change and by definite, and I’ve been through it as an employee when the companies were bought and sold. You don’t know exactly what’s going to happen, you want to try to do your best and what happens happen.

Skot Waldron (21:58.00)
That’s amazing. And I always also tell people that the time to start building the trust is not when you’re going to tell them you’re selling a company, right? I mean, the time to start building the trust is years before that and all the habits and behaviors and the way you communicate with them beforehand. So that when you get to the point of, you know, maybe doing something like selling a company and trying to deliver the message, that they can have some anxiety. It’s not, I mean, it’s only natural they’re going to have some fear behind that. But how do they move through it is by putting their trust in the trust they already feel for you because you’ve done some work in building that.

Wes Michael (22:42.00)
Yeah, hopefully you’ve built that up, so they don’t. I mean, I’m proud to say all of our folks, at least our US-based folks, we have wonderful folks in Bosnia that work through us through another company, so I can’t control that as well. But all of our US folks got a reward out of this. Part-time college kids, whatever, they all got a reward. So again, money’s not the answer to all the world’s problems, but it helps get over a few things, right? It helps.

Skot Waldron (23:09.00)
It helps for sure. Okay, let’s run through a few little lightning round things here, okay? And those are going to be various topics. I’m just curious about a few different things. What’s your instinct? What’s your first initial thing, okay? So, what is one trust killer in research?

Wes Michael (23:33.00)
Trust killer in research. Well, when they show they don’t get it, they haven’t done, you know, they’re talking about a disease, and they don’t pronounce it right or they live. You can tell they don’t know what they’re talking about. It’s like, do your homework, people. You know, because what will happen to trust if they don’t know anything about what they’re saying.

Skot Waldron (23:52.00)
Yeah, not doing your homework. I mean, you know, you can tell right out of the gate when that happens. Okay, what’s a hiring mistake that you made early on?

Wes Michael (24:04.00)
Well, one of the first people that helped me was wonderful and I wouldn’t have done things without her, but she got another full-time job, and I got clients asking me in the of the day for something and I was like, she just can’t do it. So, I said, I need to hire somebody full-time working for me. I can’t just rely on somebody helping me out. So right off the bat, that was clear.

The other thing I learned along the way was when I first started, people with small businesses. If I’m working to midnight, if I’m working to midnight every night, it’s time to hire somebody. So, I use that rule over the, and I hired somebody six months and three, you know, it’s like, okay, there’s no reason. I can’t be working past midnight. It’s time to hire somebody.

Skot Waldron (24:47.00)
That’s a good rule. Yeah. I realized that earlier on too. It’s just like, it’s just that like tipping point and you’re always thinking, but I just need this much more revenue or this much more ever whatever. And it’s a trap and you get stuck in that. okay. What’s one thing that founders of companies tend to underestimate about selling a company?

Wes Michael (25:14.00)
I guess it’s about how much it’s going to take, your involvement, your thinking, all the work that goes into that. I don’t know, but I don’t think you would know. It’s like one of those things. If you knew what it would take, would you do it all, right? So, thank God you don’t know going into it.

Skot Waldron (25:39.00)
What’s one thing that you think builds trust more than anything else.

Wes Michael (25:50.00)
Well, it’s the simple thing of keeping promises, even if it’s a tiny little promise at the very beginning. You’re showing respect and you’re showing you’re thinking about the other side, right? Because that’s what you have to demonstrate. You’re not in it just for you. You’re in it for both. And you demonstrate that. So, the littlest thing, again, you say you’re going to call, and you do call. You say you’re to him a gift card and you do give him a gift card. Sounds simple, but so often people don’t, right? “Oh yeah, we’ll give you a call. We’ll set up a meeting,” and you hear nothing. It’s like, what’s that mean?

Skot Waldron (26:27.00)
And that is one of those things that I call a brand withdrawal from your brand bank account. It’s kind of that those things that keep withdrawing, then people just have it in their mind of, so and so is the kind of person that just doesn’t, that says they’re going to do something that doesn’t.

Wes Michael (26:44.00)
And then it’s the reverse too. You build up in that account. Years ago, we paid people through this check processing company that I got a call that they were in Canada. They were being shut down by the US feds and the Canadian mallies. Nothing that we were doing. They were apparently some other branch was doing these. You’ve won the Irish sweepstakes, send us money and we’ll, you know, there’s some scam thing.

We had money in there that was supposed to go out to people, and they couldn’t tell us which was going out and which wasn’t. And so, we had to wait for people to ask it. Well, thank God people have already learned to trust us. They knew that we were trying to pay them. So, we had built up and so we could pay from that capital. I’m so sorry. There’s this issue to let us know what’s that. Yeah. So, you know, we had to withdraw from that bank account to make, make sure everybody felt good about it.

Skot Waldron (27:38.00)
That’s interesting. That’s some integrity right there. So, I think I’ll let that one slide. For withdrawing from your bank account for that, I’ll let it happen. I’ll let it happen.

Wes Michael (27:52.00)
Yeah. That’s like, no choice.

Skot Waldron (27:54.00)
Yeah. Patients need more. They don’t need more promises. They need what?

Wes Michael (28:01.00)
People doing, as I said, doing what they said they would do. They need people listening to them, really. And how do you show you listen? Well, by actions you take after you’ve listened to them.

Skot Waldron (28:13.00)
So, Rare Disease Day is coming up here. Is it the last day of February?

Wes Michael (28:22.00)
Yeah, I mean, because the rarest day of the calendar is on leap year, the February 29th, right? And so obviously every year is not a leap year. So, when it hits on the 29th, that is, but otherwise last day of the year. And then this year, since it’s a Saturday, yeah, I’m looking at my calendar. So, I know some of the celebrations are on Friday the 27th, but you know.

Skot Waldron (28:44.00)
So, do you think it’s growing? Do you think awareness of rare disease is growing or do you think we still have a long way to go?

Wes Michael (28:54.00)
Well, both of those are true. It certainly has been growing. I see more and more about it. We’ve seen it just in our business, growing over the years and dealing with so many of these advocacy groups and they’ve done a wonderful job of raising awareness of so many of these seven, some people say 10,000 rare conditions. But, right, it’s a long way to go. I mean, most of them don’t have a treatment.

So, these advocacy groups, usually it’s a mom or dad setting them up if they don’t find one in their kid’s disease. And then over time they’re learning. A mom will say, “I wish I’d paid more attention in biology in high school. I mean, they’re not scientists, but they work and it’s like, what do they need to do? They need to get a researcher interested in that topic because nothing’s going to happen without that. So, they learn and they do all this stuff. And they say they get a young researcher that’s starting to dedicate a lot, boom.

Then they start seeing the light at the end of the tunnel. What can they do? What can they learn? What can they learn from another disease area? And then we’ve made such progress in so many of diseases. But again, it’s a fraction of those seven or 10,000 diseases. So, a long way to go. Wouldn’t it be great when we look back on this and say, you remember when we had all that unsolved and it’s like, and there is no Rare Patient Voice because there doesn’t need to be because we’ve solved all that. But I don’t think I’ll have in our lifetime, but it’s, you know, we keep making strides.

Skot Waldron (30:19.00)
Yeah, we do. Do you have a short little story you can end with here about that? Somebody that you’ve seen a big impact on or just you feel that rare disease that came across in your life or your story about somebody that realized that with their child or loved one or something that you experienced in your world?

Wes Michael (30:44.00)
You know, you make me think of, I was at a patient event. I think it was pulmonary fibrosis, some lung disease, but it was not just for patients, it was for the researchers. And usually those are separate events, right? And the researchers want to do things because they want to cure the patients. But this was so interesting because the patients got up and said, “look, we love you guys. You’re trying to save our lives. We appreciate all what you’re doing. But can you do something about this cough that’s part of this disease.” And the researchers said, “but that’s not what’s killing you. We want to work on what’s…” And the patients said, “I don’t even want to, I don’t want to live if you can’t help me with the cough.”

So, they got the idea of the quality of life through to the researchers, not just let’s prevent death. And it was such a moment to see them both, you know, come to terms and have them say, wait a minute, because if you’re a researcher in a laboratory, just looking at data, you wouldn’t hear that. You’d say we got to save their life. But to hear them say, my quality of life is so bad, you need to work on this too. That was the moment that stuck with me. That’s why we need the voice of the patient, right? The researchers need to hear real people, not just points on a graph.

Skot Waldron (32:03.00)
So true, so true. Wes, if I have a rare disease, I know somebody who has a rare disease and I want to contribute to this cause, what do I do?

Wes Michael (32:19.00)
Easiest thing, go to rarepatientvoice.com. We have everything we can think of there. If you have more questions, you can email us, you can call us, we’re happy. We love it when people have questions, but people can sign up there. Again, we don’t share their information, we don’t sell them anything. All we do is send an email. We try to be unobtrusive, right? Send an email when we have something that might match up and it’s up to you. You can say no anytime you want to say no. But if you want to do it, and we’ll tell you what the reward is and what the time commitment is. People can do that. So, we’re excited to have them look at that. So rarepatientvoice.com.

Skot Waldron (32:57.00)
All right, sir. Well done. So cool to see your journey. I can’t wait to see the next 12 years. What happens in the next 12 years, you know?

Wes Michael (33:05.00)
More relaxing perhaps.

Skot Waldron (33:07.00)
Yeah, hopefully. Hopefully. So, enjoy your family, enjoy your team. I’m sure they’re proud as well to be part of this. And I’m proud to continue to support y’all every year and have you on the show.

Wes Michael (33:18.00)
Thanks for having me, Skot. You’ve been really helpful with us growing as an organization.

Skot Waldron (33:26.00)
When you think about trust, that is, I would say, the foundation to building healthy relationships. I mean, let me back that up and say, actually, I think communication is the foundation to building healthy relationships, because without good communication, you’re probably not going to trust somebody.

If we can learn to communicate well, that trust piece. It’s there, it’s solid. And how we communicate, how Wes communicates to patients, and his company, how Wes has communicated to his employees and how they’ve been able to grow what they’ve grown is because it’s built on a foundation of trust. If people didn’t trust them, they wouldn’t be where they are today.

And that I think is really foundational in everything that we do as companies and as people that we can understand how trust plays a role in our lives and in our relationships. Again, I’m super excited for Wes and Rare Patient Voice for the recent acquisition and good luck to them and what they do.

And again, please keep those people in your thoughts and prayers that have rare diseases that are living with people with rare diseases that are struggling to find answers that there isn’t a cure out there that maybe people don’t even know about their disease. Or isn’t much research at all or groups or anybody communities talking about them. See what you can do to support somebody today on that. And yeah, give them a little shout out. Thanks for being on the show.

If you want to find out more information about me or check out the show notes where there’s going to be more information and links to the things referenced in this episode, visit skotwaldron.com. And lastly, I’m asking for a little bit of love, just a little bit. So please take a moment, follow, rate the show. The algorithm is like that; it helps me get the word out. I really appreciate it.

Thank you. And until next time, stay Unlocked.