RareCan Live Discussion

We’re really proud to present the first in a series of RareCan discussions.

The topic of today’s conversation is rare cancer. Debbie Binner, Non-executive Director of RareCan, is joined by Jayne Bressington, who is the Patient Director of PAWS GIST (Paediatric Adolescent Wild-type & Syndromic GIST), and Professor Andy Hall, a Founder and Director of RareCan.

They discuss their personal experiences with PAWS GIST and Ewing’s Sarcoma, the current barriers to researching rare diseases, the potential for doing things differently, and other topics.

If you’d like to read the transcript, we’ve posted it directly below the video.

DEBBIE BINNER:

So hello and a very warm welcome to the first in a series of discussions from RareCan Limited. RareCan is a new company in this space and it’s been set up to accelerate research into rare cancers.

So today I’m joined by Professor Andy Hall who has been an academic researching rare cancers for the past 30 years and Jayne Bressington who is the Patient Director of PAWS GIST which is a charity working for PAWS GIST, which is a type of rare cancer.

First of all, I’m Debbie Binner and I am a Non-Executive Director for RareCan and I also lost my youngest daughter, Chloe, to Ewing’s Sarcoma, which is also a rare cancer. So welcome Andy, welcome Jayne.

So I think we’re all here because we believe really passionately that we need some change in this area, that there aren’t enough treatments for rare cancers and that research, sadly for a number of reasons which we are going to go into in a minute, lags behind the research in more common cancers.

So first of all Jayne, I want to turn to you and for you to share your personal experience about why you came into this world and the story of your beautiful daughter Eve.

JAYNE BRESSINGTON:

Right, well I’d had a career not in science at all. I had a career in IT recruitment and 10 years ago my daughter, who was 15 at the time, started to say that she was finding her heart going too fast. And, you know we, did the usual thing, ‘Well, have you been drinking coffee?’, that type of thing, ‘Perhaps you should cut out any coffee’. But it was still happening when she just did the least exertion. So we went to the doctors and they did a blood test and they asked us to come back in a couple of days’ time for an ECG. But we didn’t get that far. All she’d done was sit in the car and sit in the surgery and her heart was doing 127, I think it was. So we’d gone out for the day and she was getting progressively worse, got to the stage where she was actually struggling to walk. And then we had a call from the doctor’s surgery to say ,’You need to go straight to hospital. Eve is dangerously anaemic’. And that was the start of it really. Up until that point, you know, she’s a healthy girl, she was doing well at school, she’d won prizes for, you know, running, physical education, she was in all the different sports teams etc, very active and she loved dancing. And basically our visit to the hospital, it was Bristol Children’s Hospital was the start of effectively then three weeks in hospital because they called in a lot of people to scan Eve and they found this tumour in her abdomen and we’d had no sort of sign of there being anything wrong but it seems that this tumour had started to bleed and that was the first presentation that there was something wrong.

So we were told, you know, that’s something that shouldn’t be there and you need to have it removed and so she had blood transfusions, we were sent home and we went back in preparing for this operation which, you know, had caught us completely unaware. So on that Tuesday we went in and Eve had the operation and at that point the view was this is going to be removed and, you know, it shouldn’t be there so we’re just going to get it out. But when they opened her, up they discovered that this tumour was cancer or this mass was cancer and they said they hadn’t seen anything like that before in a child there. And they couldn’t..

DEBBIE BINNER:

How old was Eve at the time?

JAYNE BRESSINGTON:

She was 15.

DEBBIE BINNER:

15 ,OK.

JAYNE BRESSINGTON:

But they couldn’t remove it because at the time we’d agreed before the operation that they may have to snip a little bit off of her pancreas, she may lose her spleen but we hadn’t agreed to, or even contemplated, she would need to have her stomach removed, but they said when they looked at the tumour that was all they, that was the only way they could remove the tumour was to remove her stomach as well.

And definitely the worst, one of the worst parts of this whole saga was having to explain to Eve that actually they hadn’t been able to remove it and she had cancer. It was a terrible moment.

DEBBIE BINNER:

Yeah.

JAYNE BRESSINGTON:

The doctor who was looking after Eve, we were introduced to an oncologist then, brilliant man and he said to us, ‘This is going to be quite a steep learning curve. We think this is a type of cancer called a GIST but I’ve never seen one in a child before. And they are very rare’. And he said it would be this steep learning curve for both of us, he said, ‘because I’m obviously an expert in childhood cancers but I’ve not seen this one before’.

So it started me, obviously initially I became very depressed. I did a lot of research, you know, I was on the computer all the time looking for information. But there was very little information to be had. And then our doctor basically arrived one day with a piece of paper and he said, ‘I’ve found a place where they are doing some work on this. They have a special clinic but it’s in the United States, it’s in Washington, and I think you should go there. You may, as a family, have to consider moving there. I’m not sure but at least engage with them in the first place’.

So Eve was started on a treatment and subsequently we understand that that treatment it would never have benefited her but it’s the only way you can, you know, if you are diagnosed with GIST, you are given this first treatment as a standard course of action. Surgery wasn’t possible for Eve because the cancer had already spread to her liver and other organs. So we went to this clinic in America. It was 3 days and they’d flown in all these specialists from all over America. Surgeons, oncologists, pathologists, nutritionists and you effectively were screened for everything, you and your family.

And in this country, we were being told at the time that the only way forward is for Eve to have her stomach removed, which I found completely beyond comprehension. What a horrific thing, how do you cope without a stomach? As it was in Eve’s case, not very well. But these people, the first thing they said to us is, ‘No, don’t have her stomach removed if you can possibly manage for as long as possible keeping Eve’s stomach in place. You’ve got to control the bleeding, obviously, because the tumour kept bleeding, but she needs to grow and absorb nutrients and all those sorts of thing and she’s only a, you know, a child or a teenager, she needs to be able to grow properly’.

So we came back obviously basically saying Eve’s not going to have her stomach removed. We’re going to try and find a way forward. And I did feel this absolute rage, it’s the only way I can describe it, that, you know, the only place in the world that was doing anything to try and find out more information was in America and the specialists here, although obviously very experienced in GIST, they didn’t have much that they could offer us for a Paediatric Wild-Type GIST patient, which is what Eve was described as being at the time.

We were told there were, you know, apart from removal of the stomach, and that wouldn’t have cured her, there was no treatment, there was no cure and there was no research. So that was an impossible scenario. We came away from the consultation room where we were told that, we were all in pieces. And walking down the road from the Marsden, all we could do was cry and, at the time, having got so far, and just said, you know, we just have to pretend that that conversation never happened ’cause how are we going to carry on?

So, we put it out of our minds, and from that moment onwards that was my mission, I needed to find some answers. And I’ve got some really good friends and they were all devastated as well and one of them, Cathy, rang me up one day and said, ‘There’s this group of people, I think you ought to make contact with them. It’s a charity and they’ve all got quite positive stories, give them a call’.

So I rang what was known as GIST Support UK at the time, I didn’t know anything about them but it seemed they’d only been going for about a year and they were patients who’d also had a GIST diagnosis and also found it very difficult to get any information so they’d decided to sort of join forces and form a charity to offer support and whatever guidance they could to newly diagnosed patients. So I rang their helpline and cried for about an hour down the phone to the lady who answered the phone and then at the end she said, ‘Well, Jayne, you know, I’m a Gist patient and I’ve had half my stomach removed and half of my liver removed and I’m still here’. So it was kind of a shake me out of my malaise sort of call.

Anyway, I decided that we needed a clinic in this country but I didn’t want to set up my own charity because that takes an awful lot of work and that was going to distract from the aim which was that I needed treatments and a cure for my daughter.

So having met with GIST Support UK, I presented to them the idea that I wanted to set up a clinic because why should it have to be that people have to go to America to get that kind of service and what GIST Support UK were able to offer me was they had a fantastic network of specialists who were already interested in GIST. So with them, we compiled a list of people to target and we wrote them a letter and, of the 33 that we wrote to, 11 came back saying they wanted to help. And one in particular, Dr Ramesh Bulusu said, ‘I don’t just want to help, I want to lead this initiative’.

That was the start of discussions about moving from where we were where there was nothing for us, no options, nothing for us apart from really radical surgery and no option of a cure to at least doing something that might end up with those things.

We met with Dr Bulusu, we met him in Oxford for about an hour, no sorry, 4 hours and, you know, he understood what we wanted but he said, ‘Well, to go from where you are to having those things, you need to have things in place because you’ll need, you know, you’ll need some money first of all. If you want a clinic like they’ve got in America you’re going to need at least £40,000 to get that started because it’s not a standard thing that the NHS is just going to say “Oh yeah we will set one of those up”. You’ll need a tissue bank’, he said, ‘because anybody who you may attract who wants to do research, if they can’t access samples to be able to do their research, you will struggle to keep them interested because they’ve got projects they’ve got to get on with and they’ll go and do, you know, breast cancer research because the materials are easier to access. You’re going to need a registry’.

So he set the agenda effectively and I am a target driven person and that was basically the target. So, armed with this information, I went back to Dr Steve Lowis in Bristol and every consultation with him was obviously a consultation about Eve, and then my list.

Fortunately for us he was very well connected and by the time I arrived there saying, ‘I need a tissue bank. How am I going to do that?’, he said, ‘Well, I think you need to speak to my friend’, and that’s when I rang Professor Hall and he very graciously, instead of putting the phone down on me and telling me to go away, he said, ‘Oh I think we better talk’. So we spoke and I introduced him to Dr Bulusu and I think they met in Carluccio’s, as it existed at the time, down in London and the idea of having national GIST tissue bank started to grow.

So I’ve been on a mission ever since, I’ve engaged with European patient groups that focus on Sarcoma and GIST, American patient groups and basically following every possible lead to try and improve treatments. I mean we do have now a national GIST tissue bank and we have stimulated..

DEBBIE BINNER:

Fantastic. Yeah, yeah. 

JAYNE BRESSINGTON:

Unfortunately, not in time for Eve. Eve died two years ago, well two and a half years ago now, and you know, the work goes on.

DEBBIE BINNER:

Do you know, Jayne, there’s so much about your story that is familiar with mine. And that idea, and god my heart, it just takes me back to that time of the idea that you come, you’ve got this completely healthy child and then you walk into a clinic and overnight the worst possible thing happens but at the same time you are told, actually this isn’t a priority for researchers, this isn’t an area that we’ve got a lot of development in so basically the chance of us doing anything about your child’s cancer is virtually zero.

And I don’t know about you, but I just found that absolutely, the fury that came out of me, and again that’s what drives me, Chloe died seven years ago and I just cannot bear the thought that I haven’t done something to stop another family or parent going through that. It’s just the most unbelievable thing and, I think, so I want to turn to Andy, Professor Hall now. But I know my friend Simon Davis who used to run the Teenage Cancer Trust said the best thing a child and actually the medical profession needs is a pointy elbowed, loud and pushy parent and particularly a mother and I think, you know, people like Jayne, somebody who’s got up there and used her experience to do something but should we be relying on mothers to do this and to do their little bit. Why isn’t there more progress in this area?

PROFESSOR ANDY HALL:

Well thanks very much Debbie, it’s a privilege to talk to both of you. I mean fundamentally, I’m sitting here because of two pointy elbowed people and you’re both of them. I’m so fortunate not to have to have gone down this route myself and I appreciate that as a father of two lovely children that this hasn’t happened to me and there but for the grace of god and all.

So both of you are the reason why we set up RareCan fundamentally. So do we need pointy elbowed mothers to make it happen? Yes ,we do, but actually the door is there to be pushed open because there’s a lot of interest in rare cancers. Scientists are very keen to do it. There’s just a practical issue and that is finding material to work on. So getting access to tissues, in particular, is vital. In many ways, scientists would prefer to work on rare cancers because the common cancers are relatively well researched. If you want to publish a paper on yet another aspect of breast cancer, you may well find something interesting but it’s much more competitive than it is within the rare cancers where sometimes there is nothing known at all. So therefore there’s a chance of success for them.

So the idea behind RareCan is just to get over that obstacle and to bring people together to make that happen. So your work is what lies behind all of it basically.

DEBBIE BINNER:

So RareCan, so this is, I mean I know myself that spending, and the same as Jayne, I didn’t want to set up another charity ’cause I thought there were a lot of charities doing a lot of great work and I didn’t feel I had anything to add to that. And I wanted something that had impact, that was a disrupter in this space, because Chloe died seven years ago and if a child walked into a clinic today, they would have exactly the same chance of survival, which was virtually nothing, and actually Ewing’s Sarcoma is a little bit more common I believe than what Eve had. But even so, it would be exactly the same.

So RareCan has really excited me with the fact it’s a disrupter, it’s looking to use new technology in a more effective way and it’s looking to really empower the likes of me and Jayne so we’re not working in silos on our own, but that we can group with other people and actually drive the improvements by being available and going directly to the researchers. So that’s what excited me about RareCan, but tell me why you set up RareCan and what exactly it seeks to do?

PROFESSOR ANDY HALL:

So the reason for setting up RareCan is wanting to help people like Eve and Chloe, but the reason why I feel it’s so important is that obstacle of identifying people. So from a personal point of view, I started off as a haematologist, so I trained as a blood doctor as you might want to call it and was all set to embark on a career as a consultant and I thought I ought to do 6 months of research because that’s kind of what you find you should do. And I sort of carried on doing it for 30 years rather than 6 months.

 

JAYNE BRESSINGTON:

 ..or got cobwebs on.

PROFESSOR ANDY HALL:

So what excited me about the laboratory side of things was that you can actually make a difference in a different sort of way. I take my hat off to my colleagues who have spent 30 years seeing patients individually but from the research point of view, you can make a greater impact. My chosen area was in childhood leukaemia where, to be honest, the survival rates now are in the 95% area. So it really shows what the impact of research can be.

DEBBIE BINNER:

And just to capture that point, Andy, ’cause I think leukaemia is such a great example, this has gone from a cure rate of 5%, 20 years ago, is that right?

PROFESSOR ANDY HALL:

I mean it’s probably realistically zero % actually and the 5% were misdiagnoses is what I would think.

DEBBIE BINNER:

So we’ve gone from zero chance with a child coming in a clinic in the ’70s, ’80s, to now 95% of people, children, diagnosed with leukaemia survive.

PROFESSOR ANDY HALL:

Yes, I mean the survival rate in older people is much less unfortunately, but for children, yes. So a good risk child has a 95%. There are some subtypes of childhood leukaemia don’t do so well, but generally speaking that is a disease where the worst is behind everybody. I mean the treatment is quite, is quite harsh, and there may sometimes be some side effects which we should try and be avoiding so there’s still research that needs to be done but in terms of sort of the outlook for many patients, including Chloe and Eve, the outlook is far worse than that at diagnosis, as you both know, and the treatment is very harsh. So there’s so much work to be done in those areas. And as it happens with both of you, it’s been childhood diseases, but actually, in adults as well there are lots of different sorts, so there’s about 200 different sorts of rare cancer and if you add them all together, that’s 70,000 people per year. That’s about a quarter of the total of people who have cancer.

DEBBIE BINNER:

So Andy, just so people can understand a little bit because I think if somebody has just, as Jayne and I were in that experience of just been diagnosed or a child just been diagnosed, and then I’d never heard of the two words, well I’d heard of cancer obviously but rare cancer, I thought there was cancer and nothing else so this idea of this, there being another side, another set of cancers, can you explain a little bit more about what a rare cancer is and you know, what types, obviously Ewing’s and PAWS GIST would fall into that but for adult cancers what kinds of things would be considered rare?

PROFESSOR ANDY HALL:

Yeah, so it’s a common mistake that people make that cancer is a disease so all the time when I was working, people used to say, ‘Have you cured cancer yet?’, and in scientific terms, that unfortunately doesn’t make a lot of sense. So all that cancer is, is cells that have grown in an uncontrolled way. So cells that should stop growing, or indeed sometimes should normally die, decide that they’re not going to. And cancer can occur just about in any tissue in your body, right. So there are four main types of cancer and outside of that you have the rarer forms of cancer and, as I said, there’s about 200 where we arbitrarily call them rare cancers it actually is a figure of six in every 100,000. So it is less than that, so we’re talking in the UK of about 4,000 people in the top end of that range.

But the diagnosis is made by looking down a microscope and the pathologist who looks down the microscope can see particular features that make it different from the common tumour. So you can get rare cancers in your breast, you can get rare cancer in the colon, you can get rare cancers in the prostate and you can get rare cancer in the lung, all common cancers.

DEBBIE BINNER:

This is such an important issue, so it’s not just, you can get as they say, the wrong kind of breast cancer because it’s not the more, it doesn’t fall into the more common kind of bag.

PROFESSOR ANDY HALL:

Yes, absolutely.

DEBBIE BINNER:

Really important.

PROFESSOR ANDY HALL:

The important thing about that is, it’s not just a curiosity from the pathologist’s point of view, it actually makes a difference in how they respond to treatment. Because at the end of the day, that’s the only thing that really matters.

JAYNE BRESSINGTON:

That’s the point I suppose with GIST cancer, obviously with GIST cancer there are some mutational types of GIST cancer where they have identified what they call targeted therapies that target specifically those mutations and switch them off so that they no longer are effective, and patients, you know, with those particular types of cancers, that have got these targeted therapies, some of them are given those therapies, it shrinks the tumour away to a level where they can be removed surgically and they’re free of it or they live long productive lives just on the treatment all the time. That’s what I was hoping to find for Eve, and that’s what I hope to find for all those other PAWS GIST patients I’ve now met, but it is only by drawing attention to the need of those patients. I mean when we first started, I was told, ‘Oh well we may get two of those a year, maybe’. Now I’m told, they represent, the group I’m talking about, represent 15% of the whole number diagnosed. Well 15% of 800 is 120 people, I think it is, something of that order, so you know it’s far more than the two that I was told potentially might exist with that type of cancer but it’s only because I suppose now, mutation analysis is becoming more standard practice that rather than just being told, ‘Oh you’ve got GIST’, and, ‘We’ll give you these standard treatments’, and then for some it works and for some it doesn’t. Now they kind of understand why it wouldn’t work because your type of cancer isn’t targeted by that treatment.

DEBBIE BINNER:

So Jayne, these new and kinder drugs that you know, we’re talking about these kind of these drugs that are, you know, not the big kind of blast of chemotherapy that just kills everything, but presumably we’re not going to be able to access these unless we get unless we open the doors for research.

JAYNE BRESSINGTON:

Well that’s it, the whole point of everything that I’ve been trying to work and put in place is really merely the infrastructure to be able to support research and finding new treatments but we still haven’t got to the point where we can say.. You know there are clinical trials that happen in America and we’ve got patients here who qualify for those clinical trials but we can’t get them on it because of bureaucracy and silly rules that are put in place.

We could easily, you know, set up in parallel and, you know, have 6 patients here to supplement the fact that in America they’ve only managed to find 2 patients, you know, after a year of trying to recruit and then they close the trial and yet we’ve got patients here who could access it. It’s crazy and that’s the bit that, you know, we now need to try and overcome that hurdle and by having a system like RareCan in place, hopefully it will gain momentum and it will get more people recruited and then it kind of then can become part of the mindset of these people who are doing clinical trials, ‘Where do we go to get patients, let’s go to RareCan’. They’ve got them all there ready and we’ll set up the protocols for this trial that we can recruit people from all over the world, ’cause rare cancers, you aren’t going to get successful trials if you only do them in one country. I think they do have to be across all sorts of different geographical landscapes to be able to get the numbers of people necessary.

DEBBIE BINNER:

So Andy, just to Jayne’s point there about this, the kind of, this major block is that researchers haven’t been able to get enough patients to get that meaningful research, so how do you see RareCan working as opening opportunities up for researchers and making the area even more attractive to them?

PROFESSOR ANDY HALL:

So the whole idea behind RareCan is that it’s driven by patients and their families. So if you’re a researcher you need to have informed consent from somebody to access their tissues and obviously if they are eligible for a research project, a clinic, a clinical trial, they need to be able to give their consent too. But you can’t ask for someone’s consent if you don’t know where they are. So you have to be able to contact them, explain to people what would be involved and then people can say, ‘I’m interested in that’, ‘Yes, please, I’d be very interested to find out more’, or, ‘No, that’s not for me’. So what you’re providing to the researchers or to indeed the drug companies running these trials is a group of people who want to take part. And those are the people who at the end of the day are going to be the ones who are going to be useful to you. So RareCan very much puts the patient and their families in charge. They can decide what they’re interested in and if they’re not interested in something they don’t have to pursue it. And it is a question of geography. I mean you can present with a rare cancer in this country from St Andrews to St Ives and beyond and, as Jayne quite rightly says, for some of the rarer tumours, you are going to have to St Louis and you are going to have to go to Bordeaux to find people and it’s our belief that there are lots of people out there who, if they only knew, would be very willing to discuss things. If you do it from a top down approach it’s very, very difficult for institutions to find people because they’re not set up. They’re set up under geography and they will look after, even if it’s London, there may only be five people in the whole of London who’ve got a particular condition. What Jayne’s done with the PAWS GIST clinic is brilliant because it brings people in from around the country and she’s got people coming from far afield but even to meet Jayne, they’re not going to come from St Louis.

DEBBIE BINNER:

Yes.

PROFESSOR ANDY HALL:

So it’s a way of bringing people together around the world.

DEBBIE BINNER:

Jayne what do you..when you, and I know you have known Andy for a while and you’ve worked together, but what is your, and I know you are supportive about RareCan, but why does it matter to you?

JAYNE BRESSINGTON:

Well, everything takes so long. I mean that’s the thing. We started out with this plan in 2010 and we still haven’t got treatment, we still haven’t got a clinical trial and you know they’re still quite a long way off because identifying which drugs might be appropriate for particular types of GIST is the first issue, then trying to persuade a company that has a drug that might be effective to actually consider allowing us to use it, you know, we’re just, we’ve been told so many times you’re just too small, there aren’t enough of you and, you know, at the end of the day, a lot of pharmaceutical companies they are looking, you know they have to make an income from all the money they’ve invested in developing these drugs, and so drugs aren’t naturally produced that are going to be effective necessarily in a small group of patients. But if we can make ourselves bigger, so we’re actually offering them, you know, this big pool of patients who have this same type of cancer, we are going to have, you know, we’ll just be stronger and have something more to offer, you know. I mean that was the idea for clinics, so yeah, we focus patients in the UK with that particular type but we’re still in the scheme of things, small. I mean we’ve united with European colleagues and have united with American colleagues and we’re still small and we need to spread as far and wide as possible.

DEBBIE BINNER:

And, Andy, presumably the issues that Jayne has would be there are lots of other Jaynes around the place and so part of the issue of RareCan is to find those people, find those people who are so frustrated and, you know, wanting to do something but can’t push because they are one person or a small team. So exactly the same issues would apply in different disease groups if they fall under this rare cancer is the one’s Jayne is talking about.

PROFESSOR ANDY HALL:

Absolutely, I mean there will be a group of people who don’t want to engage, so there’ll be a group of people who say, for whatever reason, let it be. This has happened to me and they don’t want to take it any further and I’m a great believer in people being able to do that, if that’s their choice. But I don’t think there are any other Jaynes in the entire world exactly the same as Jayne.

DEBBIE BINNER:

No.

PROFESSOR ANDY HALL:

Because she’s a very remarkable person but there’ll be a variance of that, of people who are keen, and I think both of you have taught me the importance of hope, but realistic expectation, so it’s that balance between the two and I think what Jayne said about coming out of the conversation she had and said, ‘Right OK, we have just got to pretend that didn’t happen’, spoke very strongly to me because I think if you’re in that situation where you’ve been told well there’s absolutely no prospects of anything then you’re left with nothing at all. I mean obviously we’ve got to balance that against being realistic about what we can do with 180 different conditions but at least it gives that opportunity for something to happen which otherwise wouldn’t exist.

DEBBIE BINNER:

That’s fantastic. So thank you so much, we’ve had such, it’s such complicated issue this and so many different issues. But if I could just finish with one message from both of you about why people, Jayne firstly you, what would you say to your PAWS GIST community and maybe to other communities out there about RareCan?

JAYNE BRESSINGTON:

I would say, please look at the website, please sign up, even if you’ve signed up, you’re not committed to anything other than potentially being available to an organisation which might have a treatment that would cure your cancer. And even if they’re offering you the opportunity to participate in a clinical trial, you still have the option not to do it. But you know, faced with no option moving forward, why wouldn’t you do it? You have to sign up.

DEBBIE BINNER:

Thank you so much Jayne, and Andy, finally you.

PROFESSOR ANDY HALL:

Two people I would like to talk to really. One would be the potential members, the people who are patients. And to them, just be assured your data’s safe with us and your interests are safe with us because we take a lot of notice about people like you and Jayne and what you require. The other is to researchers, come and find us. We’re going to have lots of interesting problems for you to solve and solving a problem in this area will be immensely rewarding for you both scientifically and career wise but also emotionally because you’ll get that kick back of knowing you’ve done something worthwhile.

DEBBIE BINNER:

That’s lovely, thank you so much. We are going to have lots more conversations and I’m sure Jayne will be joining us in loads more of those as well. And just to remind you, it’s www.rarecan.com. Have a look and ask us any questions and join these discussions, we’d love get more people who have been diagnosed, their families and researchers coming on and talking to us more.

Thank you very much.