mdgroup live is our webinar series shining a spotlight on the people and stories behind clinical research. Too often, the human voices behind trials are hidden behind data and paperwork. This series changes that by focusing on the people and experiences that make research truly human. Here you can rewatch the full episode or read the highlights below.
In our second episode, “From Rare Disease Patient, to Rare Mom & Advocate“, Sarah Woods joined our Founder and CEO Miriam Dervan, to share her journey as a rare disease patient, rare mom and advocate. Shaped by lived experience and years of leadership, Sarah’s perspective challenges how clinical research engages patients and caregivers, and shows why patient-centered research must move beyond consultation to true partnership.
Highlights
[00:00] Introducing Sarah Woods
[02:35] Recognising the early symptoms of rare disease and the long road to diagnosis
[05:33] Finally receiving an HHT diagnosis and what it meant for Sarah and her family
[08:20] Entering a rare disease clinical trial and understanding the hidden burden behind participation
[13:13] Building the Serenely Guided Foundation to support rare disease patients and their families
[18:45] Advice for rare disease patients considering taking part in a clinical trial
[21:09] A final message to the clinical research industry on hearing the patients
Introducing Sarah Woods
Miriam Dervan: I just want to welcome everybody who is listening in. Thank you for joining our second webinar in our series. Our webinar series is highlighting the people and stories, and we are bringing the truly human part of clinical research to clinical research.
For those of you who are not familiar with mdgroup, we deliver highly personalized patient support that drives engagement, retention, and outcomes in clinical trials. We have patient payments, in-home participation, and seamless travel and coordination services that remove barriers to participation and reflect the realities of patients’ lives.
We will be hearing one of those realities from Sarah today. So, just a wee introduction about Sarah. I’m delighted to be joined by Sarah Woods. Sarah is a rare disease patient, a rare mom, and a patient speaker with over 20 years of experience as a business leader and communications professional. She is also the Founder of the Serenely Guided Foundation for Rare Diseases, which is a non-profit dedicated to supporting patients and caregivers through education, resources, and national rare disease awareness.
With Rare Disease Day just days away, as we all know, it’s coming up now this Saturday, the 28th of February. This conversation feels especially timely, and I’m really looking forward to exploring these themes with Sarah today. So, Sarah, a huge welcome. Before we go into your journey and your patient journey, tell us a little bit about you. Where were you born? Where did you grow up? Just a couple of sentences about who is Sarah.
Sarah Woods: Thank you and thank you for the nice introduction, and I’m so happy to be here.
My son, Sullivan, and I, Sullivan’s 13, we live right outside of Boston, probably about 10 minutes away from the city. We’ve lived here for our whole lives. I went to grad school at Suffolk University, which is in Boston, and after that, I kind of moved on to work for some really high-growth, prestigious consumer products companies as an account manager. I think the one thing that I learned over the years is that human experience will just always be here, no matter what technology comes into play. The connection that people get human experience from products, and why they buy, and why they can relate to something. So that’s always kind of stuck with me, and has moved into Serenely Guided Foundation, too.
Recognising the early symptoms of rare disease and the long road to diagnosis
Miriam: Thank you for that, and we can talk about Serenely Guided Foundation a little bit later. We don’t have a lot of time today, and we know that you and I could talk for hours on this subject, so we’re going to get crackly and get straight into it. Tell us about your symptoms, when did you noticed them, and what were your symptoms?
Sarah: For those who don’t know, I have HHT – Hereditary Hemorrhagic Telangiectasia, and that’s a rare blood vessel disorder. Primarily, it’s genetic, but the symptoms can be blood disorder-related. For me, I suffer from chronic anemia and other things.
I think I always knew, like even at a young age of 5, I would have nosebleeds a lot, but nothing that would warrant any kind of concern. But then after I had my son, I noticed a lot of fatigue, which I think at the time, I was confused with just being a new mom. And then fast forward to 2020, and that was when the majority of my symptoms really hit.
I couldn’t get through the day without lying down. I had really bad headaches, dizziness, some nausea, but really just the fatigue was really bad. From there, I was just treated, but the questions weren’t really answered as to what the root cause was.
So that went on until 2022, and I took myself to an ENT, because I was starting to get blood spots on my hands, my lips, my face, and it was just really luck. He practiced when he was going to school, and he was like “I used to see patients like that, I know what you have”. Then he referred me to a specialist and 9 months later, because that’s how long it took to get an appointment, I was clinically diagnosed with HHT.
Miriam: Oh my goodness, so you actually weren’t diagnosed until you were into your adulthood. And you didn’t notice anything at all as a child. You had no symptoms or anything as a child.
Sarah: Just the nosebleeds. I probably had them more frequently than a normal person would, but just the nosebleeds. But then after I had my son, I started noticing really bad fatigue, and then 2020 was just real exhaustion.
Finally receiving an HHT diagnosis and what it meant for Sarah and her family
Miriam: Oh my goodness, but at least, finally, you got your diagnosis. How did you feel? Were you relieved, or were you kind of maybe a bit scared going into the unknown? How did you feel about it?
Sarah: I think I was relieved for sure. I mean, obviously, you want to know what’s going on. And then for almost 4 years, I had no idea what was going on, and like I said, even though I was being treated, I knew something else was wrong. Some of my symptoms weren’t going away, I was having all these topical symptoms and I knew something else was wrong.
Getting the diagnosis was a relief, but it was also sad that it took that long to get a diagnosis, and that I had to go through that time of just knowing something was wrong and people were telling me there wasn’t. So, I think it’s what a lot of patients go through and then some don’t even have a diagnosis. So I could relate a lot to patients who were going through those times.
Miriam: Absolutely, because sometimes you think to yourself that, am I going mad, you know? So it’s actually great to get a diagnosis. Tell me then about your son Sullivan, he’s probably 7 years of age, isn’t he?
Sarah: Well, right now he’s 13. I was diagnosed in February of 2023, and then a year later, I noticed he was just acting lethargic, kind of sick. I thought he was just kind of getting over something, so I didn’t worry but then he started getting nosebleeds, headaches, stomach aches… Like the same type of symptoms that I was having. And obviously, because I went through all of this I knew right away what to do, just to take them to the children’s hospital. And because I already had that diagnosis, I think it was just a matter of him getting genetically tested. Luckily, he didn’t have to go through all the what-ifs, so that was really helpful.
Miriam: Did you know that it was a genetic rare disease?
Sarah: In my research, from when I got clinically diagnosed, I realized it was genetic. I didn’t know anyone I’d got that from, and fast forward even more, my mom has been sick, and she was even genetically tested, and it’s not from her. They just said it can start with me and move on. But when I got diagnosed, I did know there was a good chance he would have it, for sure.
Entering a rare disease clinical trial and understanding the hidden burden behind participation
Miriam: Tell us then about when you participated in a clinical trial. First of all, how did you hear about the trial?
Because in our industry, we have a lot of issues with getting our patient populations and finding our patient populations, and luckily we have a lot of patient advocacy groups, but there’s also a lot of people out there that don’t know about trials who would benefit from them. First of all, how did you hear about the trial, and then tell us about your experience of entering the trial.
Sarah: Again, ironically, right when I was clinically diagnosed at that same appointment, my provider introduced a trial to me. I think my immediate reaction was “This is great!”, and it is great, and everyone should know what their options are. That’s kind of how I was presented with the trial, at that same appointment. A little bit overwhelming, because I wasn’t sure at the time, really, what that meant, what went into a trial, and then I started to learn, as I got further into the workups involved, and there’s a lot of prep. I had to do a journal, I had to use an app, I had to do all these things before I even got the active drug or placebo.
Miriam: So your trial was actually was double-blind, it wasn’t open label or active. You didn’t know if you were getting the placebo? Did that frighten you at all? Because you know, it can be very scary and very frightening for a lot of patients going into a trial, because it is going into the unknown, and you don’t know how you’re going to react, or what your adverse events are, could it inflame your symptoms…
Sarah: Yeah, and I think everyone wants a treatment or cure, right? Like, you go into it like that, and hopeful, and obviously, I’m still hopeful. For me, I got up to the point where I was provided with either the placebo or active drug, I didn’t know at the time. But for me, at that time, I was still having emerging symptoms of my diagnosis. Or maybe not even, but I couldn’t connect those back, and I still was kind of understanding the changes my body was going through. So, for that, and a couple of other reasons, I did not move forward with the trial I had. But it was more than just that. It was other things that we’ve talked about before, in terms of resources and everything.
Miriam: Yes, yeah, I know. It was great to hear that, where you went for your diagnosis, and they knew about trials, because as I say, so many populations in the world don’t know about clinical trials, and we’re trying to find those populations. And educate our industry and educate ourselves on how we can broaden our horizons, our vision and look further afield for patients like yourselves.
In respect of the trials, what support would you have liked to have had? What do you think that we could do maybe a little bit better in terms of supporting patients to encourage them to enroll, and then not only to enroll, but to also stay in the study?
Sarah: I mean, retention’s a big point, right? It’s like, everyone wants to do this, but I think the rare disease community at large has to always think about what the patient’s life is like behind their visits, and behind the trial. Everyone still has to live their life, and some aren’t working, some are still trying to work through their illness, like people are sick. I think you have to understand that.
It’s like for me, I had to still care for my son. It was just me at home, and I was still trying to work, and the decentralized trial that I was on still required me to go and get blood draws all the time. You have to always understand that those blood draws, even though I’m pretty close to Boston, the whole process could take half a day. So that’s half a day I have to take out of work.
I think you have to understand that patients are still trying to manage their daily life, and so what I wish would be, is that patients had more access to resources, but they knew to ask for them, too.
Building the Serenely Guided Foundation to support rare disease patients and their families
Miriam: Yes, and I’m glad you brought that up, because that has been a big issue that has been missing in our industry for a long time, the empathy and the compassion for the patient. Patient isn’t just a number.
In my day, many years ago, they used to refer to patients as subjects. Now they’re participants, which is a little bit better, but they used to refer to them as subjects. But these are very frightened and scared patients who have the illness, who have the disease. They’re trying to cope with that themselves, never mind enter a trial and go every Friday to the site to get the blood draws, or whatever it is. People have their own reality, their own families. Sometimes with pediatric studies, you’ve got families caring for them as well, or caregivers. I think our industry really needs to show a little bit more support in their compassion and empathy for the patients.
Tell us then a little bit about your foundation, because I was going to ask you, with Rare Disease Day just days away, it’s this Saturday, what would you most like the industry to commit to over the next year or so, to better support not just rare disease patients, but other patients? Because you’ve set up your own foundation. I think everybody would be interested to hear what that is and why.
Serenely Guided Foundation
Sarah: I mean, I think it goes back to what we were talking about, just awareness of patient resources; what’s out there, more support for patients, just putting out there that, yes, this trial can be overwhelming at times, but we’re here to support you with these resources. And I hope that patients know that they can ask questions. I think that would be one thing I’d like to see in the next couple of years, is that more awareness is out there.
With Serenely Guided Foundation, we have patient and caregiver wellness boxes, and then inside we offer little tip cards that say like, “how to ask about resources, what’s available, connect with your social worker…”. Because a lot of times on sites, it’s the social worker that’s gonna present those to you, and then they get a box like this. It has wellness items and everything’s customized, so if a family comes to us and needs resources like, compression socks or pajamas, we custom provide those resources in this box.
Also meals are huge, so we’ve also collaborated with Mom’s Meals, which is a nationwide company, and they provide us with the funds we’ve raised meal cards. The meal cards are home-delivered, they’re dietary friendly, which is a huge concern for patients. They don’t have to meal prep, because it’s already done and it’s ready to heat. My own mom used it when she was not so well. They’ve been a great collaborator with us.
I just think that more support for nonprofits in general, like, sponsoring boxes like ours, or our youth awareness program.
Miriam: I mean, you guys do incredible work, Sarah, because what we need to educate ourselves and our industry about is that we’re dealing with real people, real families who are dealing with the patients. And that sometimes can be missed and has been missed over the years. Now, we’re all talking about patient-centric. Absolutely, there has been movement, no doubt about it, but I think there could be a lot more movement. It’s wonderful to hear what you guys do and it’s such a pity and shame on us that a patient is having to give this level of support to other patients when we should be doing it ourselves, because it’s our industry that’s providing the clinical trials.
We were at a conference last week and there was a lovely lady called Levita Menenses, and she works for Silence Therapeutics, and she brought up a very good point. She had a whole list of all the logistical reasons why patients don’t stay in trials, and she brought up one point: “Can the patients who are in trials take sick days?” And I had never thought of that, and Levita just brought it up. It was a great question to ask, because again, people like yourself, you’re working, you’re a single mom, you have to be in work 9 to 5, Monday to Friday, you can’t just decide go to the appointment at 12 o’clock on a Wednesday. I just thought that was something very interesting about sick days. Can we introduce that, and take a sick day when you’ve got a patient going to a study site visit? But there are lots of different things we can do to look at our patients.
Advice for rare disease patients considering taking part in a clinical trial
Miriam: Can I just ask you another wee question, Sarah? What advice would you give to patients or caregivers who are considering taking part in a clinical trial, but feel uncertain or overwhelmed?
Sarah: I would just say to keep leaning on your point of care. So, your provider, your social worker, don’t be afraid to ask for what you need. If you need more parking, ask for more parking. If you need a stipend for childcare…
I think as a patient going into a clinical trial for the first time, which many are, you don’t know what you don’t know. So, you don’t know you can even ask for those things. With the initiatives that we’re doing, here’s the box, here’s this card that says “don’t forget you can ask about travel, don’t forget you can ask about meals”. It’s prompting the patient to ask those questions because the reality is, they might not present those to you; everyone’s busy. There’s a protocol to focus on, and honestly, write patients into the protocol. Maybe the protocol should say, “Have you called your patient today, and asked how they were doing?” – to have a human element behind the trial.
Miriam: Absolutely, 100%, and I think we’re getting a little bit better with that. They are being listened to. There are lots of patient advocacy groups out there and they’re being listened to in the patient design.
I think what happens, though, and what’s still happening a little bit, is that services like ours, we are the critical, essential, enabling services, but we always seem to be kind of paddy last, as I would call it. Really, we should be paddy first, because we’re the ones who are literally in front of the patient, with the patient, on a day-to-day basis. Hearing them crying on the phone, hearing the families crying on the phone, you know. So, for us, we should be at the front, but instead, most of the time, we’re at the back, but we’ll continue to try and push ourselves to the front.
A final message to the clinical research industry on hearing the patients
Miriam: I just want to read out one of the questions that I have here. If you could leave today’s audience with one bit of advice, one bit of takeaway, what would it be?
Sarah: To put the perspective of the patient and what they’re feeling and going through first. Always think of them first. Always think about what they have to go through every single day, like we just talked about, to even get to the point of making it to an appointment, to even get up out of bed in the morning. Honestly, we have to dial it back to like, there’s a person behind this, and there’s an illness behind this that’s never going away, unless there’s a treatment. And, unfortunately, that’s a huge burden to bear, and so let’s just always keep thinking about patients and their caregivers.
Miriam: Yeah, and I think that’s very profound, Sarah. I was at a conference there in Philadelphia back in October, and we had a sickle cell patient who said exactly the same thing. She was asked that very same question at the end of the presentation, and she said, “You see a number in us”. We see a number on a document or on a piece of paper, but there’s a human person who has the illness behind that number, and it was very powerful and very impactful.
Sarah, thank you ever so much for sharing your story with us and your insights. Honestly, you are one amazing lady. We say that all our heroes are those who don’t wear capes, and you and all our other patients who take the risk in participating in clinical trials, and you guys who give us your courage, we certainly owe you our compassion and empathy and our support. So we’ll continue fighting for the patient, Sarah. You are definitely one of our true heroes.
So thank you for today. Thank you, and I’d like to thank our audience as well. We truly appreciate you listening in. You’ve had the lovely Sarah from Boston, and you’ve had the Irish scarecrow from all the way. It’s been a very international webinar and we very much look forward to all of you joining us again in our third webinar in our series in another couple of months. Thank you very much, everybody.
Sarah: Thank you so much, Miriam. Thank you for your time.
Miriam: Thank you, Sarah. Bye-bye.
Have you already seen the previous mdgroup live episode?
In that conversation, Miriam Dervan spoke with Peter DiBiaso about his journey from seasoned life sciences executive to diagnosed patient and how living with Early-Onset Parkinson’s reshaped his perspective on patient-first care in clinical research. His story highlights the importance of empathy, support and truly understanding the patient experience.
Rewatch the previous episode or read Peter’s full story here.
