Patient Perspectives

The patient journey | ATTR (transthyretin) amyloidosis and wild type amyloidosis disease

May 18, 2021 FIECON Season 1 Episode 1
Patient Perspectives
The patient journey | ATTR (transthyretin) amyloidosis and wild type amyloidosis disease
Chapters
Patient Perspectives
The patient journey | ATTR (transthyretin) amyloidosis and wild type amyloidosis disease
May 18, 2021 Season 1 Episode 1
FIECON

Vince Nicholas and Paul Pozzo are patient advocacy leaders at the UK ATTR amyloidosis Patient Association. Each live with a variant of the rare disease amyloidosis; ATTR (transthyretin) amyloidosis and wild-type amyloidosis, respectively. 

In this podcast they talk to us about their patient journey and their experiences as both patients and patient advocacy leaders.

Amyloidosis is a protein disorder in which proteins change shape, then bind together and form amyloid fibrils which deposit in organs. 

As amyloid fibrils build up, the tissues and organs may not work as well as they should. Amyloidosis is a long term (chronic) disease. The severity of the disease depends on which organs are affected which can be the heart, blood, or liver,which may necessitate a liver transplant.

Vince and Paul discuss how educating the wider population on the symptoms of amyloidosis, ensuring an early diagnosis, is THE key to managing the disease before it becomes too advanced.

Show Notes Transcript

Vince Nicholas and Paul Pozzo are patient advocacy leaders at the UK ATTR amyloidosis Patient Association. Each live with a variant of the rare disease amyloidosis; ATTR (transthyretin) amyloidosis and wild-type amyloidosis, respectively. 

In this podcast they talk to us about their patient journey and their experiences as both patients and patient advocacy leaders.

Amyloidosis is a protein disorder in which proteins change shape, then bind together and form amyloid fibrils which deposit in organs. 

As amyloid fibrils build up, the tissues and organs may not work as well as they should. Amyloidosis is a long term (chronic) disease. The severity of the disease depends on which organs are affected which can be the heart, blood, or liver,which may necessitate a liver transplant.

Vince and Paul discuss how educating the wider population on the symptoms of amyloidosis, ensuring an early diagnosis, is THE key to managing the disease before it becomes too advanced.

Guy Lacey, Associate HEOR and Access | FIECON 
This is the FIECON podcast where we talk to patient advocacy leaders and thought experts on a particular disease to understand the burden unmet needs patient journey, and potential future developments for diseases that may not currently have the voice they need. So we introduce two patient advocates who speak about ATTR amyloidosis. We have Vince and Paul, welcome to the podcast both of you.

Vince Nicholas, Founder | UK ATTR amyloidosis Patient Association
0:49  
Yeah, Hi there. I'm Vince Nicholas. I've got ATTR amyloidosis, which is hereditary. I've been diagnosed now for about 15 years and had the disease actual symptoms for probably about 12 years, had a liver transplant in 2010 and on one of the new drugs. I helped set up the UK ATTR amyloidosis patient Association about two years ago.

Paul Pozzo  | Trustee UK ATTR amyloidosis Patient Association
1:21  
Hi, my name is Paul Pozzo. I have wild type ATTR amyloidosis. I'm a trustee of the Patients Association. I have been for the last year. I'm 70 years old, I retired five years ago, mainly due to when I was diagnosed, I got out of breath and couldn't really continue. I ran a medium sized engineering company.

Guy Lacey  
1:50  
Getting into an overview of the disease, we'll talk about the disease disorder, population identification, mechanism and treatments current and future view to give me an overview of the disorder itself.

Vince Nicholas  
2:05  
The ATTR amyloidosis, which is hereditary, is familial. So, you get that through your gene from your mother or your or your father. And it's a 50/50 chance whether you get it, in my particular family, probably about 60% of us have had it over the over the years, and I've lost a lot of relatives and brothers and sisters are still living with it even now. So it's decimated my family and my Mum's family before that. 
So, it is a terrible disease. I suppose we're very lucky in this time, juncture in our lives, where there's new technologies coming along to support help that whereas two years ago, there was nothing in the UK there's probably with people with ATTR amyloidosis that have been diagnosed probably about a couple of hundreds of them. And we do find that early diagnosis is very key. But getting the right diagnosis is very difficult at the moment. 
So as a patient organisation been working with the medical people and the drug companies to make the public and GPS and around Europe and the UK more aware of this disease and how they can recognise it from different tests and stuff like that, because the symptoms can be unless you put them all together, you can't necessarily come up with ATTR amyloidosis, you can come up with a cardiac problem or neuropathy problem and things like that. 
So it's very difficult. So we're trying to bring that out to the wider population to get this recognised because in our cases, early diagnosis is a key to trying to help people get a normal life with the new medications. If you leave it too late, then your body gets affected badly with the bad amyloidosis gene. 
So yeah, and the treatments there are at the moment with the new technologies are still coming out today and in the future. And so the future is very bright for us who already got it but certainly the next generation pool What about wild type?

 Paul Pozzo  
 4:03  
Well, yeah, unlike Vince, I have amyloidosis but I have the wild type amyloidosis, which it mainly affects the heart It can affect other things as well but mainly it affects the heart and has nothing to do with genetics as far as I know.
 It's not within family groups or anything like that. You either get it or you don't. And it's caused by non genetic mutations. 
It's caused by the amyloid breaking apart, mis-forming and depositing amyloid fibrils on healthy tissues. In my case, my heart that's where that comes from, which obviously makes the heart thicker hence you can't do as much breathing as easily. 
My symptoms have been, since I was diagnosed in 2015, shortness of breath when you exert to yourself, I can walk for some way, two or three miles, although my wife says I amble, but I can't exert. I can't climb hills without stopping every 50 yards or something to get my breath. So that's wild type.

Vince Nicholas  
5:16  
Yeah. And just going back to ATTR amyloidosis, what does the patient look like? 
Well, most of us look quite well on the outside. But inside, we're really fighting a battle. So you know, to all intents and purposes, we all look very well. And that's where really the mistakes happen on diagnosis. 
And so it's very key that that we are able to give this information to the medical people, not just from our association with particular amyloidosis professors, but what we're trying to do is have a total holistic care package. 
This is very important, because there's so many different types of symptoms that could be recognised as something totally different. It's very, very important that nurses and people looking after patients recognise the symptoms. So people like psychologists and other people, not just cardiac, or professors, or amyloid professors is very important that people recognise that at all different levels. Because, you know, we spend a lot of time when we're in hospital with nurses, cardiac nurses, or special care nurses. 
And it's very important that they understand the symptoms to get people diagnosed early on. And so yeah, so from an impact of your body is very, very bad on your body, especially when neuropathy and heart conditions ATTR affects both effects, the neuropathy and the heart, the heart in ATTR is not is specially affected, the nerves are affected more so. 
But unfortunately, with nerves, it affects your whole body. So it's very important that we get diagnosed early because we can stop that or slow it down, at least by using these new drugs. 

Guy Lacey  
6:59  
Thanks for that, guys. And really, really interesting. Moving on to talking a bit more specifically about burden itself. You both mentioned a lot of burden aspects and things that affect yourselves, are there any things maybe that affects carers or for groups that might not necessarily be directly related to you. 
And then also, you know, talking about other burden issues, the misdiagnosis, as you guys mentioned, is a big deal here. 
And the clinical burden, any other economic burden or quality of life aspects that you think are very specific to the disease area?

Vince Nicholas  
7:33  
Well, I think with a lot of rare diseases, or general, you know, like cancer, amyloidosis can affect you in many ways. And it does affect your whole family and your extended family in some ways, but your care is, for instance, it changes your life completely, it tips it upside down. 
So all the things that you could do before that you can't do any more, you have to rely a lot on people to support you, like your wife or carer, or children, it's very important to have that network of support, you really need to talk about it to people and let people know about your burden. 
Because without that, you know, it does affect you mentally, and also physically. So, it's very important to do that. And a lot of people with ATTR, who have had it for a while struggle to get their mind around the fact that they can't do things as well as again, me personally, I've got to be careful when I walk and I can't feel things in my fingers or my toes, so picking up things or cutting things or dropping things because you can't feel and then also from a mental point of view, or mental point of view, you do go to a very bad place sometimes and think about all the problems you've got. 
And it's very, very key to have counselling and stuff like that really to support you and your carer or your family. So, you know, is very, very difficult. And as the disease progresses, even with the new technologies, because majority of them only slow it down, they don't stop it completely. 
But we live in hope soon that there will be a medication for that. So yes, the burden is very, very high on the family. And like all patients with a disease or condition you get to grips with much quicker than probably your carers or your family. So you've got to bear that in mind and be open about your problems with them because it takes them longer to realise that you can't do things so the quality of life is completely different. And you know, you're going from a status of being able to look after yourself and then suddenly you have to have people looking after you. 
So, I would recommend talking about this to people and just offloading all your issues because it is not easy. And also from a diagnosis point of view. We've got to be very careful not mis-diagnose this disease and certainly with the wild type as well because you know there's different types of ATTR amyloidosis as well so, and they're treated totally differently. So if you're not careful, it's a blood test, but it's quite a unique blood test. So if you get the wrong type of amyloidosis diagnosed, and you give a treatment like for instance, chemotherapy, and not this new stabilising drug, you can have serious side effects on that. 
So it's very important that we acknowledge that and we allow any training and that goes forward to make sure people on the front line they're doing these tests and know what they're doing. Paul, anything you've got to say about that, or what's the impact you have on with wild type?

Paul Pozzo  
10:35  
From my point of view, on the wild type side, I'm very lucky to have a wife that's so understanding, and I think that in the nicest possible way, she helps me out greatly. Sometimes one of the worst things I feel is guilty that she's got the burden, from that point of view, but I'm lucky, I can still do most things except a marathon or run, I can still walk slowly and do all the rest of it. I don't have any problem there so far. I appreciate it is a progressive disease. And although I'm on my trial drug, there are no drugs, or wild type amyloidosis available. At the moment in the UK, it is very difficult. And your mental health, again, fortunately, I don't suffer too much. But you do get dog days that you think,what? Yeah, why me?

Vince Nicholas  
11:35  
I totally agree with you, Paul, because I remember, even two years ago, I didn't have anything at all, and the burden is quite, quite strong on you and your family. But as soon as you get that little bit of hope of knowing there's something out there, and you're told you can go on the drug, it kind of lifts you to a different level. And even though, you know, it's experimental sometimes or the trials went well, but just the fact that you've got something you can possibly give you a quality of life moving forward. It's not a cure, but it's going to sustain you for a while. That's very important.

Guy Lacey  
12:11 
Some rare diseases we were looking at recently, which affect children, very young children, which does carry a burden there. And those diseases it's very obvious, the parents taking care of them and having to take time off work and such like, but when it's a disease that affects adults, specifically, and also maybe later on in their life, it's difficult to then realise the carer burden as much.

Vince Nicholas  
12:36  
Most of us, like Paul, we've had to retire early because of ill health. You know, luckily, we were able to do that, in most cases. And, as our particular ones affect us later on in life, you know, we've done, I was going to say, the hard work of working for many years, able to support ourselves, but there are some types of amyloidosis where they get them, they're in their 30s and early 40s, which is much of a bigger burden.

Guy Lacey  
13:08  
Talking about what is the current unmet need and the disease, in your opinion, oh, you both already touched on lack of a drug that actually treats the underlying disease itself, obviously, some that you know, attack or  reduce symptoms as best they can, are there any other key unmet need aspects to it?

Vince Nicholas  
13:26  
I think there's a few unmet needs, but a lot of it is just down to timing. And, you know, as I said earlier, two years ago, we had no drugs, and then suddenly, two, maybe three drugs appeared on the market very quickly. 
So, you know, you don't have time to hang around and work on it methodically to make sure everybody's aware of it. So, you know, we're all rushing to get some white papers out and procedures, not just of how to handle this disease, and what the new drugs can do. 
But, you know, we're talking a worldwide situation and we work heavily with the all the other patient associations certainly in Europe, and with Zoom and things like that, we talked to a lot of patient advocacy groups in America, New Zealand, Australia, so we're trying to get like most things, a common practice with all these people. 
So everybody can work from say, the same hymn sheet about how to diagnose how to treat, you know, simple things like holistic care teams and places like that. 
So, you know, that's still a very big unmet need and, and the other thing is really making people on the front line, like GPS nurses aware of this disease, and you know, we're making some inroads in training, you know, we know now that cardiac nurses on their courses when they are training for nursing now, get a course on amyloidosis. So, you know, that's a huge breakthrough for us. 
And, you know, it's always going to be about education, education. of medical, but also educating the wider population, you know, when you go to a GP surgery, you sit in the waiting room? Well, not so much now because of COVID. But, and you see all these little information about all these different diseases, what we want to try and do is people recognise amyloidosis, we can have something there, which triggers them. But you know, like all these things, you've got to be very careful, you can't just go out and do that. And but you have to have the network in place to support all that. So that's a very huge unmet need. I think that, you know, that's, that's going to happen, certainly in the next couple of years. And we're doing a lot of initiatives, with the medical people with the drug companies to work on that.
And recently, I've just been involved in a holistic seminar, where we were, we're looking at doing a white paper with all the other patient associations in in Europe to support holistic care teams and stuff. 
So that will be trying to be published, certainly by early next year. So there's a lot of focus on that, that side of it. And then the other unmet need, which we've always said, is trying to get people diagnosed early and people to recognise and come forward and question their GPs, question their doctors about what they've got. And that's going to be very important in the next few months and years. 

Paul Pozzo  
16:26  
But what one of my biggest unmet needs that I have to say with the people who don't know about it, it's some GP, I love going to my GP now, because I know more about amyloidosis. But know that the nurses didn't seem to know, five years ago? Oh, what's that? They might have heard of it. But now they're becoming more familiar with the problem, and I think, to coincide with that, because people don't know about it, they don't really know what you're going through, as it says, you go into a doctor's surgery or somewhere and they say, Oh, you look really well. And, you know, but they didn't see you three minutes earlier, trying to do your shoe laces up. Every time you bend over, you can't breathe, and that sort of thing. So I think an appreciation of what we all go through is, is an unmet need perhaps. 

Vince Nicholas  
17:33  
Human nature is very funny, because, you know, recently I have to use a stick more these days to walk. And before that going to London from our appointments, I used to walk and get the tube and everything, I can't do that. And it's amazing how people treat you so differently when you've got stick. And I remember sitting on a bus once in London, I had to sit in the disabled, but people kept looking at me thinking why is he sat there grumbling at me? But you know, it's one of those things, and it's just human nature. And you just have to get through that.

Guy Lacey  
18:05  
Yeah. Especially with a maybe a milder variation, you might have not so obvious phenotypes that maybe a GP, in a rural part of the UK might just be like, 'You're fine'.

Vince Nicholas 
18:19  
Innately, yes, absolutely. You know, you've just got another symptom, which could be anything. 

Guy Lacey
18.23
And it's affects, maybe, if you were slightly older, as well, shortness of breath, could be a million, very easy things to treat. And they're never, as you said, without education, choosing amyloidosis diagnosis, this  is miles off for some of these GPS, who, as you said, Paul, don't even know what it is in the first place.

Vince Nicholas  
18:43  
And you know, even as patients we get confused when we're getting into this age, you know, with the symptoms you have, is it because you've got amyloid or is it because you're just getting older? It's a fine line.

Guy Lacey  
18:57  
So current treatment options available for you both at the moment including off label, and also those to come in the future, what does the pipeline look like for patients like yourselves?

Vince Nicholas  
19:11  
Certainly, as I say, the future's bright, so to speak for us and the next generation, as Paul was saying, and he'll probably speak a bit more later. Wild type hasn't got any drugs available in this country yet, but they're working on that and Paul can probably say something about that in a minute. 
But from an ATTR point of view, we are very lucky in this country, and other parts of Europe as well, but with NICE and the way we approve drugs is very different from other countries. We're unique, which is very good. So the new drugs which are coming on there's things that go into three different types really different categories. 
The first one is a stabilising drug which at the moment, there is only a very an old drug which is used, called diffusional, which comes kind of binds on to the ATTR fibril and stabilises it. 
But there's a couple other new stabilising drugs coming along which do exactly the same which are going to be more effective. So it stabilises the gene, the recent ones which are got approved about a year and a half, two years ago, which one of them I'm on which is Patisiran, and the other one is Inotersen and they are gene silencing drugs, which are very important. So, it goes in and silences a high percentage of the gene producing this bad protein. It's individual, like most cases, it affects them slightly differently. So the amount of knockdown which is the amount of ATTR, which is stabilised can vary between patients, it could be anything from 16% to 95%. So, so even, that's fantastic to think that that can happen. So we're very, very lucky. And you know, the sooner people can go on that which when they get diagnosed, the better because it stops you getting neuropathy, huge neuropathy problems. And because your body can recover, in most cases, if you've had it a long time, like myself, I'm just happy to be stabilised a bit. So I can have some sort of normal life. 
The next phase, which is going to be very exciting, which is already been in human trials just started is CRISPR technology where they actually snip, they have this technique for drugs, that technique which goes in and finds the bad gene, and snips it and takes it away and replaces it with a normal gene. That's roughly how it works. And they've just started human trials in this country, the US and New Zealand and we will be seeing the same results probably towards the end of the year. So that's very, very exciting. 
And then the next phase, which is not in the pipeline yet, but that they are looking at having some sort of drugs, which will actually flush away the excess amyloid protein which is already formed in your body, which would be very exciting. And then the other thing, which bit like the COVID vaccines they're trying to work on, the fact that you can have different vaccines will still do the same thing. So what they're working on now, is if you have a stabiliser, then a gene silencing drug together, would that improve your situation? So the future is very bright. And you know, Gone are the days where we had nothing when, you know, the fact that you had to have a liver transplant, which completely changes your life as well as having the disease, which is I wouldn't, you know, if you have to have it fine. But hopefully these days they won't need people won't need to have that, which is very good, because it does change your life completely. So yeah, so the future is very bright. Paul what do you think? What's your opinion on all this? 

Paul Pozzo  
22:51  
You just gave a really good overview.

Vince Nicholas 
22:54  
But you're on a particular drug. Aren't you're on a trial at the moment?

Paul Pozzo  
23:00  
As I said before, on wild type, there is no drug available, apart from a trial drug, which is now closed for anybody else. And that's the point really, there's nothing available for wild type amyloidosis, the things we're working on, or they are working on, probably won't be available for a year or so at least, as a sort of conventional drug that can be prescribed.

Vince Nicholas  
23:27  
And the one that Paul's on is a stabilising drug, which destabilises the protein by blocking itself to the actual protein and kind of stabilising it. So Paul, you don't know whether you're on the placebo?

Paul Pozzo  
23:43
When you get on one of these drug trials, you don't know whether you're taking the actual drug or a placebo. So I'm on a 13 month drug trial on month 18. We'll find out at the end of another 12 months.

Vince Nicholas  
23:59  
Good thing is where you're still here, Paul, that's a good thing.

Paul Pozzo  
24:01  
Oh, absolutely. As my wife keeps saying,

Vince Nicholas  
24:04  
Yeah.

Paul Pozzo  
24:05  
Live and kicking.

Guy Lacey  
24:06  
Yeah, definitely with some trials, depending on how severe the disease is, sometimes they don't feel it's actually ethical to have a placebo arm but it's interesting they feel that that's okay in this case.

Vince Nicholas 
24:20  
Yeah, I think on the gene silencing drugs, the initial because there's several trials, you know, they just don't do one. But there's several years of trials. And I think in the early trials, they did a placebo effect. But beta trials, and one of the trials I was on originally didn't have a placebo. So you were on the drug. But you're right, yeah, it can be a bit unethical. And I think as new drugs come available, or to be trialed, and I think that will become more the case because, you know, we have options now. Whereas before we had nothing, and you know, people can go on these stabilising drugs or these gene therapy drugs, but if a new one comes along, they have to really give them that treatment. They can't go on a placebo because they can say, Oh, I don't need to I can go on these other drugs. So yeah, I think you're right with that it can be unethical, very difficult for patients to sign up to that in the future.

Guy Lacey  
25:19  
Definitely. And moving on to the main aspects of you guys doing the day to day patient advocacy groups themselves? How important are they if your disease area currently, and maybe thinking further into the future for drug developments, you know, pharmaceutical companies incorporating their opinion, especially as you get incorporate into NICE's approval opinion for some drugs that are coming out? How do you see the importance of patient advocacy groups going?

Vince Nicholas  
25:51  
That's a good question. But basically, in fact, I got involved in this very early and because I was helping the national amyloid centre in London who are one of the top amyloid centres in the world, and I've been helping them with their research for over 20 years since my Mum died. So even before I had symptoms, and when you know, not all patients can, can do that, or feel they can support that sort of thing with doctors and others. And so from a patient point of view, it's very important that the patient voice is heard. And I was I've been involved with pharma companies getting me involved in talking about the patient experience with drugs and how we can support them their approval on non approval through any system for approval, and certainly NICE. 
So I've been involved in that, well, for quite a few years, and it's very important. And I have found and Paul probably would be the same because we've just done recently a drug, approval or through NICE, and they do listen to you to the patient, a voice. And one of the key things, you know, you may not know, all the technicalities and technical data and all that goes over your head. But at the end of the day, the patient is there, they can worry about statistics, they can worry about all that stuff. 
But at the end of the day, you can put forward your own real life problems, and it kind of brings all together and brings them down to earth again and in really shows them why they are there to approve a drug. And that is very, very important that the patient's voice gets heard. And that's happening quite a lot now. 
And we're doing a lot of forums with drug companies with the patient's voice and the importance with advocacy groups, within the pharmaceutical companies and with other groups around the world to be able to enable patients to experts become on these approval processes. And it seems to work it seems to work very well. It just brings a human factor to all that. And I think that's very, very important. And I can see that getting better. Moving forward certainly. I mean, not all countries have that. And every country is different. But we have to work towards the patient voice being clearer. And these approvals these drugs is very important. We can show that in the UK, definitely. Paul, what do you think? Your experiences?

Paul Pozzo  
28:36  
I agree with everything you say. I mean, my opinion on advocacy groups is, I just look back to when I was first diagnosed and I remember going back to the office and my, account manager said 'How was it?' And I said, 'Well, I've got this thing called amyloidosis'- which he then Googled and just awful. Yeah, if you read things like that, I'm going back a long time. But so I think it's important for new patients, especially who are diagnosed, to be able to look at patient advocacy groups, and be able to talk to people who know their condition who are experiencing what they experienced.

Vince Nicholas  
29:22  
Totally agree because, you know, a lot of patients think when they get diagnosed, that's it. They're going to be dead in a few months or weeks.

Paul Pozzo  
29:31  
It is goes over your head, however nice they are. Yeah. You’re told that diagnosis. Yeah, you go somewhere else for a bit.

Vince Nicholas  
29:37  
Yeah. And it's very important for us advocacy groups to, and people within it as being patients can show that some of us like me, for instance, still here 12 years since getting, having symptoms. So, you know, it's not a short period. It is a long, windy road, unfortunately. But you know, we're still here we have some quality of life, which is good. And I think that's what we need. To bring to as advocacy groups and patient associations to support, you know, not just people in the UK, but worldwide, really, and give them hope about the future. And support is very important.

Guy Lacey  
30:14  
And in terms of final thoughts on a disease area where are patient advocacy groups at the moment?

Vince Nicholas  
30:23  
I think we've said quite a bit, actually, but I think, at the end of the day, when you get diagnosed, you've got to have hope. And you've got to share your experiences with your wife, your family, and people you meet, don't bottle up, you know, come clean about your disease. And really, if you need help you get help, like counselling or whatever. And also question, you know, ask questions about your disease, your professional doctors, or other people. So they are aware of that. 
And so, you know, never take things as read or as literal because they don't know everything. And so, you know, you're in command of your, of you and your body. 
So you just got to be open. And I find that myself being open, and sharing my experiences, not, which just patients and other amyloid people, but generally, you know, people are interested to hear your story, and it just helps, you know, from, from a mental point of view, and it's very important to have that outlook on life, you know, always have hope. I think that's the most important thing. For any final thoughts, Paul, what do you think?

Paul Pozzo
31:38  
I hope the Pharma companies continue to give back to people like us? Yeah. And I think they get a better insight to what they're doing. Getting at grass roots, you know, and I'm convinced of that. But going back to Vince's point, not everybody can sit here or sit somewhere and talk about their problem, that's if they're not that way inclined, they won't, unfortunately, do that.

Vince Nicholas  
32:12  
Yeah. And I think you're right, Paul. And I think one of the things that we've been looking at is patient groups, you know, there are a few at patient amyloid groups around the country that support people, and they all come together and chat. Not everybody likes to do that. And I think we've got to be able, when we do, you know, have one to one conversations in place, I've spoken to quite a few patients one to one, or visited them before COVID. And, you know, they just want that personal contact and go through their experiences, your experiences, and bounce ideas and frustrations and, and you know, it's very, very, very scary to try and have that in, you know, live with that without that support. And I think we just have to recognise that human nature is the fact that not everybody wants to go to a big meeting or sit around in a group to talk about their lives. I think as a patient organization is really important. And we're starting to do that and have the Zooms and info days and certainly to give a chance for people to listen in and they want to take part they can or not, it's entirely up to them. But I think that's what we're trying to do. And that's one of the key areas that we're looking at to try and bring information about the disease to a wider audience from in this country.

Guy Lacey
33:39  
Thank you very much for joining us today. A very interesting conversation on ATTR amyloidosis and look forward to seeing what the future holds in this area. From everyone at FIECON.