Search Interviews:

Jeremy Weisz  20:35  

I like what you said before, was Cisco. I was wrong. Right? What were you saying? Listen, I thought, because you’re a researcher

Jeremy Weisz  20:47  

at heart, and you’ve done lots of market research. So you’re fine. Seems like you don’t have an ego. If you’re wrong. You’re open to the data. And you said, you know, I thought people would not pay the same amount for diabetes as they would for hemophilia. You were wrong.i love to hear all the places where you are wrong. And what you discovered. So one is stage four cancer. You had an assumption that was wrong there. Yeah.

Wes Michael  21:16  

When people used to say to me, even before this, can we do interviews with people with stage four cancer? I’m like, I think, you know, thank God, we made progress now. But typically, they might not have much time left, just like they might have something better to do with your time and do a survey, right? And who are we to impose on something? Well, definitely, I was wrong there, at least at least the people I deal with. They’re like, No, thank you so much. I feel like I’m helping. If I’m not helping myself, I’m helping those who come after. And I will get notes. We’ll get notes.

John passed away. He, but we wanted to let you know how much he enjoyed doing all these surveys. I mean, they’re writing to us after the fact letting us know about this, like, Oh, my goodness. So who knew people? I mean, when I was working in food and spices and all that’s important to people, and it’s fun and such. But health, right? It’s you, it’s your kids? It’s like, I mean, what’s more important? It’s life. Right? So people are like, let me help. Let me help others. Let me tell you that, and they need to know my opinion. They need to know what’s going on. You know, the guy, you can’t stop people from talking.

Jeremy Weisz  22:29  

Yeah. And they felt like they were contributing to something bigger. And so hopefully a solution. Where else were your assumptions wrong?

Wes Michael  22:40  

You know, I remember at the very beginning, when we first started thinking about referrals, I sent an email out to everybody in the panel. And I said, you know, refer to people else. And somebody quickly went back and said, That’s not right. My sister wants to do it, but I shouldn’t be giving you her name. And I’m like, Oh, my God, she’s right. And I’m thinking boy, if I were in a big corporate thing, I have to run it up the ladder and and I wouldn’t want to do it because I would look like I said, You’re right within an hour I sent an email it’s like change changing program, I was pointed this out. This is to tell the person and have them contact us. Do you can’t give us somebody’s name and you know, directly. So I was like, That was obvious. I was just stupid about it. But it’s great to be able to let people tell you, people tell you when you make mistakes. And then, for years, people said we need your patients and other countries. I’m like, Ah, so much easier just to do it in the US and grow in the US and English language. And finally, we got to the point where we figured some of the people were helping us vendors figure a way to help us do that. So I said, it’s time so I don’t know if I was wrong. I just felt like ah, I was trying to avoid this difficulty. So that was another one was like okay, let’s put one more I left this with you. Those who can see easily as zebras behind me. Zebra is the mascot for rare diseases. And years ago, one of our team members says we should have a mascot like what are we gonna mascot for we go to all these patient events that somebody’s going to dress it to me it just seemed like you were picturing

Jeremy Weisz  24:20  

you’d have to dress up as the mascot.

Wes Michael  24:23  

Yeah. And that’s been suggested and then a couple years later, I don’t know what you know, the switch went off in my mind. I’m like, why not get a mascot and it’s been amazing because market research companies don’t have mascots. There’s no There’s death to death. So now we’re gonna present to the board. And I’d like to be different. We want to be personable. We have to be that way when we deal with patience. And I think our clients get it because we’re dealing with it. We’re not just a physician forever. So So and what was nothing was more obvious than Having a zebra. And you know, when I explain why it’s the symbol of rare diseases. I mean, the story goes if you’re in medical school, and they’re teaching you about diagnosis.

They said, listen, if you were standing somewhere and heard a hoof beat behind you, your first guess should not be that it’s a zebra, it should be that it’s a horse, which so logically, right, you start with a morphological narrowed down. But in the rare disease community, they’re like, but there are zebras and they never even think to think beyond a horse. So that became the symbol like, hey, we exist, there are rare patients that don’t ignore it. I know you only got five minutes of this in your medical school, but somebody needs to think about it. So we said the Zebra is perfect. Now it came together with the drawing that was done. My nephew is a commercial artist. He’s done work on CBS and everything. So it’s like, Oh, I’ll get Josh to do it. So he’s done it. Then we had a naming contest. Now you think the name is EBZ? Well, guess what?

Every name that starts with a Z is taken by a book or a movie Zoe’s Zach Zell, there, you know, and one of our viewers don’t even go there. Because it’s a movie or book or something, they won’t be happy with it. So when people suggested a few in it, and we had an online contest and voting, and it came down to hope, we liked hope and Rarity, but then rarity wants, so rarity, what a great name, because rare, rare disease rarity. And we made it a sheet we felt that was. And now at some point, we may be merit rare, you’ll meet meet a guy, and they’ll have little zebras, I don’t know, how we’ve been able to do that, we put it on our things, we again, it’s nice to have a little bit of a personality with a company because people deal with people, right? They don’t deal with companies. So anyway, I was again, I was like, why do we need this. And now I’m like, you can see I’m the big proponent of this thing wasn’t my idea.

Jeremy Weisz  26:47  

There’s a nav one, if you’re watching the video you can see I’m on And there’s a bunch of case studies here. And one of them is speaking of your mascot, is zebras do exist the diagnostic odyssey of rare disease patients. I don’t know if there’s anything to mention specifically about this particular study overview that will be interesting.

Wes Michael  27:13  

I think the key is that with rare disease, some rare disease folks will, you know, do a fly with this.

Wes Michael  27:22  

See that their average waiting period before patients received the diagnosis 4.4 years and that that’s, that’s even higher among certain other diseases. Because of that, while they’re looking for horses, not zebras, they tend not to be diagnosed, they’re misdiagnosed, which is worse, because then they’re giving a treatment that doesn’t help or may or may even hurt. And then after the fact, it was like, boy, if my rheumatologist had talked to my cardiologist and talked about whatever it might be, they would have figured it out. But you know, we have a silo, so often a siloed healthcare system. And it’s just people, you know, you see that seven is a lot of tests, a lot of doctors, a lot of misdiagnoses, it’s, it’s a real issue.

Now, you know, all this talk we have now with artificial intelligence. And so that can only help because, well, doctors diagnose well, but doctors use algorithms to diagnose and computers are better at algorithms that people are right, or at least a combination of those is good. So hopefully, over time, we’ll get better at diagnosing these things. Because if there’s, we used to say 7000 Rare Diseases, I was at a conference. Now they’re saying 11,000, your general practitioner is not going to know how to diagnose those and even a specialist, he may see one of these people. So but but a computer can have all that data, and maybe that’ll shorten the period that could be that might be the big breakthrough that’ll help people get diagnosed. So we’re looking

Jeremy Weisz  28:51  

Here were some of the specific diseases. You mentioned hemophilia, that’s how you got started. Yeah, we have cystic fibrosis and Ehlers Danlos Syndrome here and talk about that one for a second. You talked about that before hitting record on one of the ones that keeps coming up that gets misdiagnosed.

Wes Michael  29:12  

Look at that. It’s that the average time that the blindness was 21 years 21 years, because typically one of the symptoms and others can talk about it better than but it’s almost you know, what we used to call people double jointed or loose join. The often that arrows downstairs joints can be very loose, not that it doesn’t sound very serious, but that’s just one symptom. There’s a lot of other things that can make it make it a lot more serious.

But but but you know, people go to various doctors and they’re looking at it just from their specialist perspective. And they couldn’t see because it’s a combination of different things that gives leads to this diagnosis. So it takes so long again 21 years to be diagnosed with this condition. And again, with this anatomy, the sooner you’re diagnosed, the better off you are because you might There might be some treatments that help and prevent it from getting worse. So it’s probably

Jeremy Weisz  30:04  

the ones that have so many different symptoms that are so hard to pinpoint, because it couldn’t be one thing or another thing.

Wes Michael  30:11  

Yeah, exactly. So it’s, and I feel bad about that particular disease EDS, because we haven’t had when we get a request for a study, that means somebody’s working on a treatment, and they’re not just doing a study for fun, they’re doing it because, hey, we’re working on something. And I’m not seeing a lot because we’ve started to see a few. But hopefully, there’s more and more work come through that the one above that cystic fibrosis, oh, my God, there’s been so much progress on that there’s certain different mutations that lead to but some of them there’s, there’s wonderful treatments, and these people are living much longer and more normal lives. And that’s when we’re, they’re diagnosed right away. Now, because there’s newborn screening, some of these things, we don’t need to wait around, we can find out at birth, and then they can get the right treatment from the very beginning.

Jeremy Weisz  30:54  

So I’ll just pull up here. I mean, there’s probably a lot of information online about it. But this is one from the Mayo that we’re looking at here that just kind of gives an overview of this, you know, so what’s the severity of the complications of having us? Do you know,

Wes Michael  31:16  

I think it can affect your vascular system that Yeah, I think it’s not just the the fact that you’re

Jeremy Weisz  31:26  

so fragile skin. I mean, that’s the biggest barrier for immune system as the skin in South

Wes Michael  31:31  

Nashville or abrupt ruptures of blood vessels. That’s pretty serious stuff. Yeah,

Jeremy Weisz  31:37  

it’s crazy that someone would go to doctors for 20 years. And

Wes Michael  31:42  

and then they think they have it and it’s not, it’s something else you’re gonna treat, and you’re wondering why it’s not getting better changing.

Jeremy Weisz  31:48  

Wow. It’s a crazy world.

Jeremy Weisz  31:50  

There’s another one that you did. I think you call it pemphigus. How was it?

Wes Michael  31:59  

pemphigoid Oh, horrible. I say what diseases are good. But people get these blisters so protectively internally, what can be more painful, and it’s not just about being painful. It’s a deadly, deadly condition. And there’s a wonderful organization and we go, I’ve been there many times where we meet patients and ask them to join but that sticks with me because I’m like, Oh, what, what could be worse than this, this condition, and then again, a lot of them are misdiagnosed along the way, you know, who typically finds it? Dentists, right? Because it’s there people are going because there’s a problem in their mouth. Or at least it’s it’s where the first thing,

Jeremy Weisz  32:39  

anything interesting.

Jeremy Weisz  32:40  

I don’t know if this is my perception or not, but I feel like there’s maybe it’s just been diagnosed with a rise in the diagnosis of Crohn’s and Ulcerative Colitis and some of these all diseases, if you’ve heard anything interesting in the Crohn’s realm.

Wes Michael  33:02  

Yeah, I mean, they’re certainly I was just reading about that there seems to be a lot more I don’t know if it’s

Jeremy Weisz  33:08  


Wes Michael  33:10  

I’m not a I’m not a you know, herbalist or whatever. But it probably has a lot to do with diet, you know, we are, if you’ve heard of Dr. Robert Lustig, he’s the anti sugar guy. But he loves smart things, but processed food and all this stuff. And I used to work for processed food companies. So who might have bought up a lot of this stuff we didn’t have even 50 years ago, we weren’t eating nearly as much of that. And of course, the logistics thing is to eat real food. He, there’s aliens paleo diet, he’s a lot of these diets are wonderful. The key, the key that they have in common is eat real food, don’t eat processed food, where it’s all been ground up and see your body’s not processing or it’s not just what you’re eating, it’s how your body processes. But some of that may be going on there. I don’t want to pretend to know, you know, how to treat or anything. But definitely, there’s more and more of that, fortunately, there’s a lot more treatments. So we get a lot of requests to talk to those folks and and have them take a look at, you know,

Jeremy Weisz  34:07  

new treatment from the company standpoint. Wes, you know, I want to talk about setting it up to run efficiently and properly. Because eventually, you know, with companies people want to sell someday, even if they don’t want to sell some day. They, you know, I had with you, John Warrillow from built talks about this on the podcast, and he’s got a great show too, about setting it up. So if it’s running without you, you could work on the business in the business, even if you have no plans on selling it. So talk about how you’ve set up the company. So not necessarily as an exit strategy but as to run efficiently without you. Right, because have you done it?

Wes Michael  34:51  

I’m a big fan of that and have done well building this up because yeah, if it’s built, it’s actually built to be a good company. I mean, the two aren’t mutually exclusive. So do you have something from the very beginning? I intentionally didn’t call it Wes Michael research or something like that, because I thought, I don’t want it to be, though that, yeah, that could work. But I wanted to have its own identity, and not just me, because he, you know, you want it to work down the road. And then the key thing is, Ben, when it first started was just me. So I had to do everything. And, you know, I’m a lazy guy, I don’t want to do that forever. So I had a rule that every time I was working until midnight, it was time to hire somebody. So I got the midnight I hired my first guy a few months later. And so we kind of do that. Well. It’s true, you know, did you know if you get good people, that’s, that’s the name of the game.

So we have teams that do the projects, we have teams that do the proposals, teams that do the patient outreach, I was able to go away a couple of weeks ago with my daughter, through Paris, in London and Edinburgh. And yeah, I check my emails and things. But the business, the business runs, any questions, those people they can make a wonderful answer to the questions. And they do it. So it’s, and at the very beginning, could be, can people do it as well? It’s like, no, because I knew it in and out. But now they can do it better than me.

And then we systems grow up as I do. And I don’t even know the systems because I’m doing it everyday. So I couldn’t do it if I wanted to. But I like to say i People make mistakes, right? I tell our people every mistake, and some mistakes are costly. Sometimes we pay people twice or things go wrong. I said, Look, every mistake you’ve made, I’ve also made, I get it, I’m not going to be like You’re an idiot, you know, I’ve made it.

Jeremy Weisz  36:45  

You’ve learned that’s considered training, right.

Wes Michael  36:48  

So now, it’s a wonderful habit to have a smooth running team that really knows the ins and outs, and brings up great ideas. These teams are always coming up with ideas on how to improve things. One of the biggest complaints we get from patients is they don’t qualify for study, you know, they don’t just take anybody you have to go through, they might see what drug you are, what age you are all these things. And people don’t qualify why they don’t want my opinion. And they take it personally, we had to say no, no, I’m sorry.

Well, somebody had an ID and said, hey, when people don’t qualify, let’s at least put them in a raffle for a $100 gift card. Let’s at least I can’t, I’m like, great idea. If $100 a month can make people feel a little bit better. And that’s saying how cost effective is that? I wouldn’t have thought of that. So it’s wonderful that people come up with these ideas. And I’m just like, ” What do I do? I go on podcasts. And I go to conferences, and I post on LinkedIn. And I tried to do my job. But I’m not doing that. Oh, my God, the client needs this in two hours. They know how to do it.

Jeremy Weisz  37:52  

So it started off with you. Talk about those teams for a second. And you said there’s a proposal team, there’s an outreach team, what are the different teams that are set up in the organization to make it run?

Jeremy Weisz  38:03  

Yeah, so we each each

Wes Michael  38:08  

project, we have each engagement, somebody has to run. It’s like they’re sending out emails to patients that are answering their questions, or working with a client that we get what we want to, is it working well. So there’s, there’s a whole team that runs those. And believe me, and I had to do that at the beginning, it’s like that is not an easy job. And there’s a million. There might be 20 projects you’re working on at the same time. So you’re juggling a lot of things, and some are more difficult than others. So a wonderful team that does that. And, and has a great way now of backing each other up. So because of your ad a day, what do you do, so they can do it in consistent ways to somebody else getting the file and then they pass on information.

So somebody’s not like I don’t know what they were doing here. So wonderful, wonderful thing, because they look out for each other. Then proposals will get 50 or more proposal requests a day, and I was doing this when I was in my day, you know, cutting and pasting and doing this stuff. And now we actually have a system actually, the clients can write their own proposal because the pricing is standard and our numbers are published. And it’s like it makes it easier. Put your specs in and here’s the price. But we use the same tool ourselves. Tiffany, who leaves that team says, Yeah, that’s a life changer. Because, you know, she uses that same tool. But so there’s a team that’s constantly doing that. And people when they come to us, they’re in a hurry. They want to get it, they want to wait a week, they don’t wait a day.

They’re getting those proposals out within an hour or two. And then we’re saying it’s eight o’clock at night. We have the automatic tool, you can get it immediately. So they’re constantly and half their work is not getting proposals. It’s going back and forth afterwards. Right? Well, how do we change this? Why do we change that? And then the patient outreach team that’s so important. That’s organizing all the events we go to and the people that sign up and the questions they have and validation. We can’t let people in. We don’t want frogs in our database. And ours is about quality, not quantity So they’re reading line by line. This looks weird. Let’s call that person off. Let’s see if there you can 10 seconds talking to somebody, you know, the real Oh, I got to tell you about Smith is this. They’re not giving you vague answers about something. So. So all these Yeah, that makes sense. Because I guess part timers to working for us from a fraud perspective.

Jeremy Weisz  40:18  

I mean, people can look up the disease online and start describing it. I mean, yeah, if you’re giving 100 bucks, I mean, some people, you know, think of that. Yeah.

Wes Michael  40:32  

Then, when I first started, you know, people would trickle in online. And one day I looked at 100, people signed up, I, oh, we’ve gone viral. It’s great. All the diseases were listed in alphabetical order, well, that doesn’t happen by chance, you know, somebody had bought or something. So throw all this away? And then what was the other thing? Yeah, there’s bots in other countries that can do surveys and do all that stuff. So it’s, it’s a big deal. And as soon as you know, when there’s money involved, people will figure out a way to get part of it. So it’s, it’s a, it’s a key thing. It’s you, we have a good reputation. And I’d rather not, you know, have somebody and have our clients happy than say, Oh, my God, this person’s a phony.

Jeremy Weisz  41:20  

Let’s have one last question. You know, Thanks for walking through that. And before I ask, everyone could check out To learn more, you know, if you do know someone with some type of disease, you could check out, you know, for the patient section, and you may qualify for one of their their studies, research studies opportunity to sign up without any, and if you are a research company looking for people, then check them out. Actually, I was interviewed a couple weeks ago to tell them about your company.

Jeremy Weisz  42:01  

The last question is about, you know. You mentioned systems are big, you know, when setting up the company with the team, the communication, so I’m wondering what the tech stack looks like, from like, SOPs, to proposals to software that the team uses to communicate, what type of tech do you use internally for the company to run?

Wes Michael  42:23  

Yeah, so we first started, it was all about spreadsheets. And it’s amazing what you and I knew we weren’t going to be in spreadsheets forever. It’s amazing. What you can do, you know, every panel has its own little spreadsheet. The biggest thing for us was we got, we have this wonderful company we’re with called Q1 Tech, they developed our databases, not as simple as it sounds, because it’s not just good, you have a person and here’s their disease. And here’s, here’s the person and they have these six diseases, and they’re also a caregiver for somebody with these other diseases, but they’re the person you reach to because it’s much, much more complicated than I would have thought.

But they created the tool, for example, that the clients can use to build their own proposals. And that’s the system that we actually send out the invitation, emails, everything runs or runs around that system. And so that’s a key a key tack that we’re running, otherwise, we Dropbox, you know, we’ve got certain things and we’re sharing and you every file is in there, and some people need access, and some people, you don’t want to get over over access to things like that. So those are key. From an accounting standpoint, it’s all about QuickBooks.

Jeremy Weisz  43:33  

The one thing I do myself, though, the SOPs and the process that people are following, are those within Q1 or the Q1 with Q1 Tech built or is that separate?

Wes Michael  43:41  

I mean, recently, we went through this whole process, and we’re now I know, you’re familiar with ISO certified ISO 2701. It’s a huge process about its first security and such, but it’s all about your processes and your SOPs, and you know, business plans if something goes wrong, and all that other stuff. So it forced us to make sure we had everything and have it recorded in a certain place, and that it’s reviewed every year.

And then people are trained on it every year and that we keep records of all that stuff. I mean, that’s the key for everything. So that really helped us. professionalize, if you will, and do that if it fits into that hole, get ready to sell, if you will, because you need to have everything documented. And you don’t want to just say all here’s how we do it. You know, just tell somebody you need to have it written down so they can follow a process.

Jeremy Weisz  44:35  

Yeah. Well, Wes, I want to be the first one. Thank you. Thanks for sharing the journey. Thanks for sharing, connecting researchers to patients that everything you do at Rare Patient Voice, and everyone could check it out real And more episodes of the podcast. So Wes, thanks so much.

Wes Michael  44:52  

Thanks a lot, Jeremy. I appreciate it. And I welcome everybody reaching out to us.