Unlocking Rare Disease Day With Pam Cusick

Skot Waldron (00:00.684)
That’s cool. You’re moving? that’s chaos. Where are you moving to?

Pam Cusick (00:06.712)
Annapolis, it’s only a couple hours or an hour and a half or so south of here. Yeah, it’s great. I love it there. Such a nice area. But also my husband works in DC and he’ll be going back to work more as federal employees are.

Skot Waldron (00:11.298)
Really? Wow. What drove that?

Okay. Well, it took me, I mean, it took me almost an hour Uber ride from DC to Annapolis though, right?

Pam Cusick (00:34.832)
Yeah, it’s about that. But from where I live now, it’s about two hours for him to get there. So it’s cut by a good amount. And there is some public transportation he can take to the metro. So he can take, there’s a bus at local that goes in, and then that will drop him off at Union Station. can go straight in.

Skot Waldron (00:36.886)
Okay, I was just making sure. Yeah.

Ah, okay. Well, that’s cool. Yeah. Public transportation would be a not nicer than having a commute in there and out of it. I was speaking for a, an association up there. They, they had their little gig there. It was really cool. Like I’ve never been there before. And it was, stayed at it. I only for a few minutes, like had to fly in and schmooze and then do my keynote. And then I left.

Pam Cusick (01:02.108)
What were you doing in Annapolis?

Did you get to roam around a bit? It’s really a nice area.

Skot Waldron (01:24.856)
But it was, I walked around just a little bit, cause it was a really cute town and, we stayed at the graduate hotel down there, which is super cool. That was a super cool hotel. So, I don’t know. It was, it was cool. I’d like to go back and go around.

Pam Cusick (01:28.844)
Yeah, it’s really, really nice. Let me know if you are. I’ll be there.

Skot Waldron (01:42.03)
Cool. That’s so cool. Okay. We’ll do. Um, all right. So I already hit record by the way, on this riverside recording, if it looks pixelated on my side and pixelated on your side, it’s still recording high res on your side and my side. When we get done, don’t get off. has to finish uploading on your side as well. Um, so don’t go anywhere and I’ll do an intro and outro after this. So you don’t have to worry about that.

Pam Cusick (02:07.932)
When you edit this or whoever does, can you un-pink me? I’m like, I am like pink. You don’t think I look pink? On my side, look pink.

Skot Waldron (02:13.592)
You don’t. Do you look pink? I don’t know. I don’t think he looks so pink. mean. Now you do look pink. No, no, no, no, you’re good. You’re you’re fine.

Pam Cusick (02:20.698)
Now I’m blushing because I mentioned that I look pink. I never really look pink.

Remind me not to move because all this stuff is showing. Look at this. Just like this. Right. Just like this.

Skot Waldron (02:31.63)
Okay. Just do this. Just do this. No, that’s it. That’s it. That’s it. Okay. That’s cool. All right. So if you’re ready, I’m ready. We’ll do, we’ll probably go 15, maybe 20, 15 ish minutes or so. Is that cool? All right. Here we go.

Pam Cusick (02:43.164)
Perfect. Yep. Love it. All right.

Skot Waldron (02:52.013)
my friend Pam. Hello. How are you doing today?

Pam Cusick (02:54.307)
I’m great. I’m so happy to be here with you.

Skot Waldron (02:57.228)
Yeah, we did this last year and it’s like now, you know what, when it happens twice, it’s a tradition, Pam.

Pam Cusick (03:04.86)
I know, it’s great, have to do it every year.

Skot Waldron (03:07.416)
So every year, we go. rare P rare disease patient days is a big deal in your world. And I want you to tell me why.

Pam Cusick (03:18.876)
So Rare Disease Day is February 28th, because it’s the rarest day of the year. And all over the world, people with rare diseases come together.

Skot Waldron (03:26.776)
Wait, wait, wait, wait, wait, Pam, hold on a second. Is that seriously why they call it rare disease day? Is it on February 28th? Did they put it on February 28th before that reason? That’s brilliant. Okay, I’m so sorry I interrupted you. All my guests are like, like Scott, don’t interrupt me, but I can’t help it. I have to ask that question. Okay. Please. No, no. So good.

Pam Cusick (03:43.805)
Please interrupt me. Yes, it is the rarest here. And so that’s why they have Rare Disease Day that day. We have gone to Rare Disease Day. There’s an event at NIH every year. And we’ve gone to that every year. But there are events all over the world. And I wish I could show you some pictures. Maybe I’ll send you some and you can put along with your notes. But they’ll have buildings lit up with all different colors, multiple colors to represent rare all over the world, it’s really beautiful. And I think in New York, they’ve maybe lit up the Empire State Building with the different rare disease colors. It’s like a beautiful purple and green and pink and all of these lovely colors. But the importance of the day is that it’s bringing together people who have rare diseases. Rare people don’t usually know anyone else with their rare disease.

So instead of, you know, if you have a more common chronic condition, you may have a group of people that you can get together with or that you know online. But a lot of times rare people don’t really know anyone else in their condition. I’ve met people who their child was the only person in the whole world diagnosed with a particular genetic condition. And his mom,

Skot Waldron (05:00.558)
What? What was that condition? Can you share?

Pam Cusick (05:05.5)
I don’t really, I don’t remember exactly, cause it was like numbers and you know, A one three, you know, I can’t remember what it was. It was so unique and new. No one else had ever been diagnosed with that condition and it just blew my mind. But, so this is really nice because a lot of people with rare diseases, they will go to these different events, whether they’re local, they’re, you like I said, at NIH here in Maryland.

Skot Waldron (05:11.63)
Okay. Yeah, yeah, yeah. Okay. Okay.

Pam Cusick (05:33.43)
and they have great presenters and we’ll have a booth there and there are other booths where they can get information about, you know, advocacy groups or how they can get involved. There’s an art show, just, it’s an amazing, amazing day. And, and like I said, other, these rare events are all over the world. And it’s just, like I said, it’s nice because they’re not opportunities to get together with in general with your disease area for a lot of people. So they are coming together as one rare collective group, which is really cool.

Skot Waldron (06:11.264)
that’s so cool. So why do you care so much about this?

Pam Cusick (06:14.938)
Well, rare patient voice, we connect patients and caregivers with all kinds of research opportunities. So we will meet these patients. That’s one of the reasons we’re there. We’ll meet them, explain to them what kind of research they can be involved in. They can do focus groups and interviews and surveys. They can participate in clinical trials. And a lot of times they don’t even know that they have an opportunity to do that. So we explain how they could do that.

And if they’re interested, then they’ll sign up with us. And then we give them, we connect them with clients who are doing research in particular areas, developing a product, a service, a device. Sometimes they already have a product that’s coming to market and what they can, they’re looking to develop educational materials and they need patient input. So that’s why we care to connect with those patients.

Skot Waldron (07:08.536)
That’s so cool. I’ve learned so much working with you and your team and, just getting to know you better. It just opened my eyes at, at what this is about and the impact of the work that you do. And, just following you for the past several years now, it’s just been, it’s been super cool. Just, get the education and y’all have been growing so much. the exposure you’re getting not just here in the States, but even globally is super cool.

Pam Cusick (07:27.356)
I don’t fool.

Skot Waldron (07:37.562)
so the, the more access these, these individuals have to each other, the more we can increase the treatments and, and the accessibility and all the things that, you know, people with rare disease, I’m sure battle with all the time.

Pam Cusick (07:55.068)
Absolutely.

Skot Waldron (07:56.586)
tell me a little bit about why patients should engage in this research at all in the first place. Like what’s in it for them? What’s in it for the world? What’s in it for you? I mean, what’s in it for everybody.

Pam Cusick (08:11.736)
Sure. I mean, the main thing is they’re the experts on their condition, right? They live with that condition day in, day out. They know all of the impacts on their daily living in a way that a doctor doesn’t really know. They know academically what goes on and anecdotally from their patients. But from the time you get up to the time you go to bed and maybe all through the night, you are having impacts from your disease in some cases that when you’re in your doctor’s office, you can’t really cover all of those things, right? How did this medication work? you have any side effects? What’s going on? And you’re not thinking about all the maybe nuances of things that are happening during your day. When they’re participating in research, they can share with a moderator all of the ins and outs and the impact on their job and their family life and things that maybe don’t come out when they’re talking to their doctor. So that helps inform researchers so that they can then develop products, they can develop services that actually help the patients. So the main, you know, I think that one of the top reasons is so that they can share their expertise. And patients come back to us all the time and they’re, they just feel like it’s almost therapeutic in some ways to talk to someone who understands their disease and who they can share openly with, because sometimes they don’t want to burden their families with things over and over. so talking to a moderator is like this very cathartic experience because they get to share, you know, maybe some of the things that they’ve kept inside. And that’s one piece. We also pay patients for their time. So they earn $120 an hour for sharing their expertise, which is very valuable too. Mean, they should be compensated for their time. Physicians are compensated for their time when they share their expertise. So there’s no reason patients should not be compensated also. I mean, those are a few things they get out of it. The money is great, but a lot of times it’s more about helping others, you know, that altruistic piece where you can help someone else who maybe is diagnosed after you to shorten that journey that they, you know, to diagnosis that.

Well, here some of these symptoms, ask your doctor about that. And it might actually make things a little better for someone else down the line.

Skot Waldron (10:47.778)
Yeah, I can’t imagine. and that’s what I’ve learned from you too, is the heart of these individuals that you talk to, some of them you work with and just the experiences they’ve had. mean, you’ve had, mean, I remember you’ve, you’ve had. You know, people that you’ve interviewed and people that you’ve met that have then become coworkers. Right. 

With you, just because of the impact that they had in the interview process, but also that that came, they’re like, I want to be part of this. which was really, I think really cool on my side to hear that because yeah, the money’s great. and they should be compensated for that. But when you get to a bigger purpose, a bigger why of the impact they can have, that people shouldn’t have to go through the pain that I’m going through of finding information, of discovering other people with this, of building a community.

That’s so crucial.

Pam Cusick (11:41.2)
Yeah, it’s really amazing. we hear back from lot of patients about that positive impact, and that really keeps you going.

Skot Waldron (11:51.02)
Yeah, for sure. What, what do you do with this information? So you’re, you’re doing these interviews, you’re getting this information. What are you doing with it?

Pam Cusick (12:00.23)
So we’re not really doing the interviews. Let me clarify that. So we’re just a matchmaker. So a researcher comes to us and they’ll say, I need to do interviews with 25 hemophilia patients. And we go out to our community and we connect them with those patients and they do the interviews. So they’re collecting that information, that data, and pulling that together, usually in a much larger project that also includes physicians and maybe pharmacists and a whole array of information to again, develop a product, develop a service, something that will help the patients in the long run. So we do a little bit of internal research here at Rare Patient Voice to keep people engaged. There are a lot of people who’ve signed up with us who, they may not have an opportunity to participate in a study because let’s say this year there’s nothing going on in their disease area.

So we try to do a little bit of something like a short survey, and then we’ll share the results back with them. And that’s really important because a lot of times in research, although patients would love to see the results, they’re not privy to those. It could be secret squirrel marketing stuff or whatever it is, but they don’t usually get the results. So the nice thing is we’re collecting that very, you know, short survey, let’s say, then summarizing it and sending it right back to them, which is really cool.

Skot Waldron (13:32.3)
Okay. And then you’re, you’re, you’re, you’re, you’re the matchmaker. You’re making this, this stuff happen. How many, how many patients are you working with? How many people do you have in your database of, you know, people and diseases and things that you can access.

Pam Cusick (13:47.292)
So there are about 180,000 patients and caregivers. And when I say caregivers, I mean like family caregivers, a mom or a dad of a child. 180,000 across 1,500 conditions. And they’re in nine countries now.

Skot Waldron (14:02.894)
Goodness, that’s a lot of people. Y’all are crushing it. I love it. I love it.

Pam Cusick (14:03.906)
I know. Yeah, it’s mind blowing. Yeah, it’s, you know, we have lots of ways we meet patients. So I said, you know, we go out to events, but we also have, and you know, these people are fantastic patient advocacy team that reaches people through, you know, through social media, through connecting with like the smaller support and advocacy groups, which we have as referral partners.

And so with our referral partner program, this is very cool. They’ll send out a unique link to that partner who can then share in their own closed networks. might be a mom who started a Facebook group or a smaller regional disease focus group. And those people can share that link. And then if people choose to sign up with us, we then donate $10 back to that association for or that referral partner for each person who signs up. So it doesn’t sound like a lot, but we have people who’ve earned thousands of dollars to support their advocacy group, which is great. It’s like a passive fundraising opportunity. And then those people who sign up get to participate and earn money. So it’s a win-win.

Skot Waldron (15:24.694)
Yeah, that’s awesome. What do you want people to do? I mean, people can do stuff all the time, but particularly on rare disease day is there’s some action that we can take. So because there’s rare diseases, maybe there’s a lot of us that don’t know anybody with the rare disease because they’re rare and we just, you know, they’re, kind of out there. We, maybe we don’t know that somebody may have a rare disease that we are associated with or that know in our circle, what can we do? Those of us that maybe don’t know somebody with a rare disease, what can we do? Our rare disease day.

Pam Cusick (16:03.324)
I think you can go to NIH, they have an online presence for Rare Disease Day. There’s another European organization called Uroardis, they, actually I think there’s a, I’ll have to look it up for you, think there’s a rarediseaseday.org. One of the organizations puts that together. But go to one of those sites and just learn a little bit about Rare. There are, I think, a Rare Disease, is something like you have to have under two in the US under 200,000 people have been diagnosed with it. you know, it’s affects fewer than 200,000 people. that’s one in 1500 Americans, right? So you could know someone with a rare disease, you just might not know it. And I think, you know, so go to one of these sites, which I will.

Skot Waldron (16:52.64)
Hmm. Okay. Yeah, exactly.

Pam Cusick (16:59.42)
get, I was trying to type it real quick, but I can’t do it and not look at you. Yeah, I can’t do it or it’s some random thing I’m typing. So I will send that to you later, but there, you know, their website, you’d go to learn something about rare disease. I didn’t know anything about rare disease before I started working for rare patient voice. And it’s amazing how many people, you know, now that I personally know who were impacted. Um, and I wouldn’t have, you know, and not just through work, there are people that are in my personal life.

Skot Waldron (17:02.968)
Talk and type, talk and type.

Pam Cusick (17:29.254)
who have a condition that is considered rare. Pretty interesting. But I wouldn’t have known that before. So I would say, if you can, go to one of these sites, which Scott will put in his notes.

Skot Waldron (17:42.926)
It is rare disease day.org. So right on. It is that one. And I just learned that there’s 300 million people with a rare disease.

Pam Cusick (17:45.858)
Excellent. All right. Thank you. You can

that is phenomenal, right? So collectively, it seems like a lot of people, right? But to the woman who I met, your child is the one person with that rare disease. That’s very isolating. So yeah, so go to that rarediseaseday.org and learn something about rare disease. And I think the more educated we can be about things that we don’t know about, the better we’ll all be.

Skot Waldron (18:18.712)
Pam, I love this message. I love having you on. love getting to network with you. I see you often on LinkedIn and so people can connect with you there. post a lot of information, there and you and your colleagues and, where else do want people to contact you? If they have more information, they want to get involved, with, with you in some way, shape or form.

Pam Cusick (18:39.452)
They can certainly email me directly. I think my information’s on our website, rarepatientvoice.com. You can also connect with us on social media. We have several different, either LinkedIn, X, Facebook, Pinterest, Instagram, all of those things. Our community can be found on, if you’re interested in signing up as a patient, certainly you can do that on our website that says sign up here and you want to be involved, that’s great. If you’re client and you want to do some research with patients, can go to sales at rarepatientvoice.com and they can help you out.

Skot Waldron (19:22.732)
You rock. Keep, keep doing the good work, Pam. What you do is awesome.

Pam Cusick (19:27.292)
And we’re going do that. Thank you so much and thanks for letting me share this information with your community.