 Well, good afternoon, everybody. Great to have you back here. The next presentation will be given by Jan Geisler. Many of you know him. He's the founder and the managing director of the Padvocates, acting as an advisor on patient advocacy, health policy, and social media. He also acts as an independent expert for the EU Commission. He'll be going over some stations in his journey. And he's going to speak about the journey to become an empowered and a professional patient advocate. So Jan, the floor is yours. OK, so thank you so much for your kind introduction. And I'm glad to be back to the MPE AGM. I've been asked to talk a bit about the journey to become a professional patient advocate. It's been taking me a while to compile that presentation, because actually I've been doing this advocacy work for now about 17 years, but I've actually never presented about how do you actually get there to become an influential advocate. It's quite strange I've never covered that. So what I want to talk about actually is probably first of all, and usually that's also something I usually don't do on stage, is really to talk about my journey as how I became a patient advocate. Because it actually started about 17 years ago. When I was 28, I was actually after university. I had my first really cool job in industry, in media. I was working in the Innovation Department. Just suddenly I got the diagnosis of cancer of CML, chronic myelotochemia, which is a disease that if it's untreated, kills within three to four years. And at that time, there were all the treatments that are available today were not available at that time. So actually I got confronted with probably not turning 29, and I think most of you know how that feels. And then I thought this is probably not the end, because I went onto the internet, and it was before Facebook and Google existed. And I found a lady in Singapore who was reviewing publications from that disease area in the US. And she was summarizing all the clinical study reports that were published in a Yahoo forum in Singapore. And via that, I found a doctor 400 kilometers away who was running a single center study. And that's what I joined after I calculated my odds. And I thought I'd probably not go into bone marrow transplant by the first try that, which was a trial with two experimental treatment where very little data was present. And then I thought, because I spoke English, well, OK, why not also translate all that into German? And that's how I came into advocacy, because I just over-weakened and installed some software on the server where I could build a website and actually publish summaries of clinical trials, translated that into German, and made it available. And then the whole avalanche of different things started. I was still working in industry. I didn't tell anyone in industry about my advocacy work for actually eight years. And I had the intent to share things, so I randomly came online. And then somebody contacted me and said, there are other organizations like yours in Israel and in England and in other countries that doing similar stuff, don't you want to get together with them? So I went and in 2003, we went to Switzerland, and we actually said, OK, let's work together as patient organizations. I didn't really know I was a patient organization, or I had one at that time. I just had a website. And then actually also, I got together with a couple of people from breast cancer, from colorectal cancer, and from other cancers, which actually said, but there's also stuff going on in Brussels. There are laws being made and no patients at the table, we should change that. And then we got together and started the European Cancer Patient Coalition in Brussels, because we actually wanted to influence health care decision making when the parliament discussed about new EU policy things. So we set this up, and I was there as a vice president and the young geek in there. So most people were probably double-aged, than I was. So I was the guy that was doing all the IT stuff and the website and all the fancy stuff around there, while I had not as much experience as other people on the board. But in 2008, actually, it came to a point where I had 60 hours a week job in industry and was doing probably 20, 30 hours in advocacy every week, which was unbearable. So at that point in time, we had developed ECPC to a level where it could actually afford to pay someone. And then I actually quit my job in industry and became the first director of the European Cancer Patient Coalition. So in parallel, we also started to get our leukemia organizations connected. We started in 2005. We discussed about it in 2007. We really did it. We started to build a network of CML of leukemia patient organizations. And we started it by four people. And today, it's a network of 118 organizations in 88 countries. And I still do that as a volunteer next to the other things that I do. It's probably one of the strongest networks in rare cancers, in a specific rare cancer, where we do a lot of these things that MPE also does. But we also do them on a global level because we're at the moment growing heavily in Africa. We're growing heavily in Asia and countries where patient advocacy is not as developed yet as we have it in Europe. So we did that mainly to empower so CML advocates is not political. We're not doing any policy work in Brussels or in governments. We really try to strengthen patient advocates to build organizations and to help them grow. And that's why we do an annual conference, which we actually have in two weeks from now, similar to your AGM with a motto, learn, share, and grow. So it's really to empower patient advocates in CML to grow their organizations. I also started to do consultancy work. When I quit ECPC, I thought I would become a consultant and I started a company, which is actually pet advocates, because I wanted to give the opportunity to organizations to, let's say, implement advocacy projects. But then the EU came into my way at the European Union because there was a call for empowering patients on medicines R&D. And they asked me to coordinate an EU project, which became the European Patients Academy EU party. And they asked me to coordinate that. So I put my consultancy address and became employed in Brussels and was actually leading a project that in the end trains patients about how drug development works. And those that are on the ADP in MP probably know a bit about it because we really, we have developed a lot of material to train patient advocates like you to get involved in clinical trial design or at the EMA level when drugs are being approved and so on. So that's what EU party did. So that's my journey. And as you could see, I mean, my background was business. I never planned to be in advocacy. I never had a medical education and I had no clue about how to build nonprofit organizations. And I must say it's been really a tough ride because with all the ups and downs in between, quitting a job, not knowing whether the NGO is going to survive being in a medical field with a lot of professionals and you have no clue and never had the basic education. It's been a rough ride. And what I really want to achieve today is that you don't need to make the same experiences that I did because some things look very straightforward here but I can tell you it's been really tough and there were a lot of pitfalls in between which I hope you will not also experience. So that's why I speak a bit about patient advocacy and about things that I found useful for patient advocates to grow and to become a professional. And I mean a professional, not in the sense of a paid professional, a professional advocate, I mean a very influential, very strong advocate in cancer patient advocacy or in myeloma. So to talk about that, what do we want to achieve as patient advocates? Of course, our core thing that we do while we exist as patient advocates is to support patients. So we want to support patients, we want to support their families, they're affected by a dreadful disease and myeloma, CML used to be that. We're today in a bit of a better situation in terms of therapeutic advances. We want to support patients that are faced with a very dreadful disease and we want to help them to survive. We want to make their life better and we want to change the policy framework that the care they receive and the treatments they receive are better than they are today. And we want to help them to make the right choices and this is what we do day by day. This is why we run the local support groups. That's why we run online forums and Facebook groups and all kinds of support services and do brochures. That's what a business person like me would call our core business. But we also want to help clinicians to give the best services possible to their patients and prevent bad and outdated practice and we know they're fantastic doctors out there but they're also very bad doctors out there. And I can tell that in Germany about 70% of CML patients are treated by community oncologists and not by the big university hospitals that go to the medical conferences and I can tell there's a lot of suboptimal care even in a very rich country like Germany. So helping clinicians is of course part of our mission to better think about what do patients need. Then of course influencing regulators because we might see that drugs are coming to approval their market authorizations going on in the EMA and their good products and bad products and also reimbursement agencies or payers are thinking do we put this drug on the reimbursement list? Are we willing to pay an outrageous price for that? And there are all these discussions and quite often they happen without any patient input. So there's a lot of assumption about the patient preferences that patients have and sometimes regulators just think about the effectiveness of a drug against the disease but they don't think about the impact on quality of life and that's also why we are there. And then of course we want to tell politicians to do policy for patients because quite often they invent laws that might over protect the patient and might not really solve what patients want but they might even over protect us from getting therapies or let's say safety data and they might probably be more cautious about things than we are or they might just not give attention to things that are really harmful to us that we want to influence politicians. So this is more or less the, I would say the role description of a patient advocate because these are the different things and it doesn't mean that everyone does everything but it's in general some people just do support some people just do policy some people just go to the researching companies and try to help them make better trials but it's more or less that's the catalog of things. And if we take it one level up what is the role of patient organizations? It's basically what I say usually three levels. The first level is really patient support so the core business what I call it inform, support, navigate, help be there for patients give them better information help them navigate a very complex environment where they are just thrown into because they got a disease and also help their families. Then health policy influencing policy and the framework of patient care and then of course research so to try to help researchers. These are the three levels and again some organizations do all of all three of them some just do research some just do patient support but it's very important to distinguish these three roles. Kind of a controversial slide is we sometimes waste our resources and we are all there for mission and we are all there for a reason but sometimes we just waste the energy we have and sometimes our energy is not the same level of energy of a healthy person with things that are in the end not of the benefit of patients but just appear and probably stop us doing the right thing. So what's the risk of advocacy failure? What's the risk of what we do probably is counterproductive is not delivering to where we want to be. Bucking up the wrong tree a very very common symptom we have in patient advocacy that we complain that Europe should fix it while the thing is actually a problem of our own country or that we are calling on the governments of our own country while it's actually a responsibility for example of the European Union. So bucking up the wrong tree is a big issue. Keeping chairs warm. It's also a symptom we have. We are being invited to so many meetings and often we don't ask if we go there are we just going there because we are curious and it's interesting or do we go there because we leave impact and what we observe sometimes in these meetings is people go somewhere, what I call warm the chairs but they haven't really left anything at the meeting and they haven't taken taking a lot home and they haven't contributed. Being territorial, trying to defend our grounds to organizations on the same disease in the same countries fighting with each other because they feel that's mine and not yours and we waste our energy with rivalry and things like that. Blaming others that things are not happening that's also a very common thing because it's very easy to complain what other people should be doing instead of thinking what can I do to change things and that's also something we quite often do and I mean it's not something typical for advocacy that's happening everywhere but we sometimes say we do it for the patients and you don't and that's a very dangerous path sometimes to take so blaming others is quite a spread symptom and then disqualifying ourselves. So going there with emotions, shout and cry I would sometimes say which might be an important thing sometimes for us to do to use our emotions because that's what we patients have because we have the feeling of suffering, we have the feeling of we cannot dare to see this going so slowly but just being emotional, being off topic and talking about things that nobody has asked or not being well informed is working against us and that's something that I want to address in this presentation is mainly the latter point is to say, how do we qualify ourselves? How do we make sure that we have the knowledge that we have the skills and that we have the impact in the things that we do as patient advocates? And one of the key things that we have been working on over the years as patient advocates is evidence-based advocacy because what we do is have opinions, what we do is we have stories but sometimes it doesn't help if you just go there with an opinion and a story because people especially politicians or clinicians or politicians will actually disregard your opinion because they say it's just Jan saying that. Everyone else thinks something else and that's why we need to go there not only with opinions, we need to go there with evidence, we need to generate our evidence and that's something we sometimes disregard as patient organizations how much power we have if we just took the myeloma patients here in the room and asked them about a specific thing if you took what you learned from these person and take that to somebody else and say we've asked 80 or 60 or 50 patients and this is what we heard about the specific thing in myeloma, it's much more powerful than if Jan goes there and say my opinion as a myeloma patient is like that. So advocating in a very targeted way thinking about which tree to bark up on evidence-based so underlining our opinion with data, well-educated because we know what we're talking about and in a professional manner that we're really trying to be rational and trying to influence them with a professional way. That's actually what targeted advocacy, the sweet spot in the middle of these three things is about and we always need to think and that's why I was saying that about warming chairs is to think about what is the impact of what we do? Has it been worthwhile going there? Do we really create an impact for patients and do we measure the outcomes? So what is the goal that we are doing, why we are doing this and have we achieved that? We don't do that often enough but to become a professional patient advocate it's important to sometimes think about impact and outcome and how to measure that. And I'm just going to bring some examples and also provide some ideas in where you could actually look at to train yourself and to become more professional as an advocate. And one of the things is really barking up the wrong tree. You can see this dog and he's actually barking one tree and the bird is actually singing on the other one. Can have the same image with the cat but actually targeting your efforts, thinking about when you do something, where do you need to go to really change things and don't waste your energy to go to the wrong level. And that's why look at that list, know your trees and bark up the right ones. First of all, understand what the EU level does and what the national level, the member state level does. For example, EMA, the approval of medicines is European for all oncology drugs. You need to go to the EMA if you want to talk about that. But if you talk about reimbursement, it doesn't help if you complain to the EMA about it. You need to go to the reimbursement agencies or the HDA agencies of your country and try to negotiate with them or understand how they take their decisions or whether they just adopt an opinion of a different member state. But knowing that differentiation of levels and also on European laws that's not only approval of medicine, it's also, for example, the framework how clinical trials are conducted in Europe is defined by the clinical trials regulation and EU regulation, not by your member state. So the way trials are being run, at least in EU member states, you need to go to Europe for this. Then medical societies versus study groups, whether it's individual clinicians. You can talk to your favorite clinician. You can talk to Peter Zonnefeld about some things. But if you want to change things systematically in oncology, you need to talk to the medical societies. They are lobby organizations. They are societies that run big conferences. They have a totally different role than the individual clinician or a study group. So think about which party you want to address if you want to address a clinical question. Then, again, companies versus industry associations. They are things where you can go to your national authority. For example, if you want to complain about a compliance code in general, you need to go to the association. If you want to complain about how it's being interpreted, you need to talk to the company. So again, two different levels for the companies and for the commercial side. And then some things, and you will see that and probably have discussed about it a lot. Unfortunately, I could only come this afternoon to the AGM is about what can you achieve in disease-specific things and what can you achieve if you join forces with other disease organizations. There are things like health policy. If you go to the parliament, nobody will pass a myeloma law in your parliament on the European parliament. There's often drug policy for rare diseases. There's cancer policy for cancers. There are healthcare laws. So some things you cannot change just as a myeloma organization. If you look at the portfolio of things that myeloma patients Europe does, they do a lot of things where you might feel they're a bit distant from their patient as such, but an umbrella organization must do these things. They must work together with organizations in acute leukemias or in CML or in lymphomas or in other diseases or in general cancers or in rare diseases because only that way they can change the framework myeloma patients receive treatment in the healthcare system by changing the overall framework. And that's a task of an umbrella organization. While there might be very specific things you can do in myeloma and only myeloma patients Europe or only your national organization can do that in myeloma. So that's very important as well. And that's why knowing what you can do as an organization in your country and knowing what an umbrella organization can do and there are other umbrellas like rodents for rare diseases or European patients forum for all chronic diseases or European cancer patient coalition for cancers. They all have different tasks and it's important to understand how they operate. So backing up the right trees and then something that we also often do as patient advocates is we duplicate and we reinvent things and just because somebody else has developed it we better developed it ourselves because there might be a little thing that is different or we're just stubborn and keep things for ourselves and say I have developed it I'm not going to share it with you. Here's a PDF but I'm not going to give you the word document. It's very counterproductive for us as advocates to do that because actually we are all struggling with resources and it doesn't make so much sense to write the same text five times. So sharing and not reinventing is pretty much our business and should be our mission. So using tools that are out there I think I'm using as an advocate quite often the data that has been generated on the Myeloma Atlas. I don't know what has been presented here but there's this very colorful map where you have all the different colorful spots in all the different European countries. It's a very powerful tool for me as an advocate and I have no clue about Myeloma where I go and say this is the fragmentation in Europe that we have and because you can see that they're low GDP, low drug domestic product, the poorer countries in Europe, there are differences between those even though they have the same healthcare spending so how can they afford to do that or how can we afford to have differences between France and Germany on specific things on access to therapies? This data is very powerful. So use these tools. Use the social media toolkit that is on the website of MP. Use the EU party starter kits. I don't know how many of you know about the European Patients Academy. That's the project I did for the last years. It's a training academy for patient advocates and medicines R&D. They have built PowerPoints. They have built a huge database of information but also PowerPoints where you can hold a three hours course about how does drug development work or three hours course on how to set research priorities or a three hours course in how does pharmacovision drug safety work? You can use these PowerPoints and hold courses of your organization. You probably just need to translate them into your language and adapt them to the myeloma needs. But the PowerPoints are there. Just use these tools and also share your tools that you do. Sometimes you do great things and then your board changes and then the file is lost because it's been on some hard disk of one of your former board members and the whole work is lost three years later. Think about how you publish the things you do and make sure that when you build a new website you don't just discard 80% of what somebody else has done. It's a pity. Sometimes out of date but it's no longer, it could really be updated and used. Maybe not even by a myeloma advocate by somebody else in a different disease. So think about how to share your own tools and how other people could actually use that from the patient community. So then know your stuff. It's not enough and I mentioned that just to say patient knows best because sometimes we as patients take the same attitude as doctors because doctors are there and say doctors knows best. I mean, they're not saying this but they behave in a way that sometimes they just say I understand what patients need and I don't know why I have to discuss this. But we sometimes start to behave the same way and we say patient knows best and don't leave arguments about whether that's the right way. And that's why to differentiate between just a statement that I'm right and knowing your stuff and threatening the system is actually building your knowledge. And there's a strategic approach to that which we are at the moment developing and we can the work group of European cancer patient umbrella groups where MP is also a member of and to think of strategically how do we build capacity? So how do we train our patient advocates in a strategic way in different areas and how do we use trainings that are out there because we cannot run everything on our own. And these are the three pillars. If you think strategically, what should the best patient advocate you have know as an expert that you can send them anywhere and they could really have an impact on the system? They're basically three pillars in which you need to train your people and just don't just think about MPE. Think about your organization in your country and think about you as probably the board member, the president, the leader of your organization. You go to the European meetings but you then again need to think about how do you train the second row in your organization? How do you train the newcomers? How do you get people to the level that they at one day can succeed you that you can get out of your board position without your organization basically dying because you're no longer there? So think about strategically how you train people, how you train yourself and others. So it's basically three pillars. The first thing is the disease pillar, very important. So understanding myeloma, how does the disease work? What kind of treatments are out there? How does myeloma care work in a hospital setting? How do people, patients with myeloma receive the right care? And what does it mean to live with a disease? And what does it mean to live with a disease? Is probably your strongest argument when you discuss with others because you understand it much better than anyone in the room when you have full of doctors and regulators. They have no idea what it means to wake up with myeloma and to go to bed. So that's your strength in the disease context. The second pillar is systems knowledge. So to understand healthcare systems, to understand science. How does access to treatment work in my country and what does Europe mean in that context? What are the regulatory process to get a drug or treatment or diagnostics or whatever from being existence in technical terms to getting into patients? How does the regulatory chain work? Navigating the healthcare system as such. So how does my healthcare system work? Every country has a different system. In Germany, we have some kind of committee that takes decisions. Half of them are healthcare providers. Half of them are insurances and payers. They take the decision on the reimbursement list. You need to understand that mechanic actually to navigate in that and to think about how can I impact decisions being made? What is the difference you wear this member state? How does research development work? So if you're being called into a meeting with a company or an academic group when they present the protocol, how can you judge what can be changed to the favor of myeloma patients? Talking about crossovers between one arm and the other, thinking about eligibility criteria which patients are led into the trial which are excluded from the trial and all these things to understand that you need to have some understanding how do clinical trials work? And for example, you train that in the advocate development program, an MP. General patients rights, they're very different from country to country. And also how industry works because you need to understand the incentives of industry to do research. You need to understand what they're telling you and you need to understand how they behave in a very complex ecosystem, how they understand in terms of pricing and all these things. So understanding how industry works helps you a lot to actually lobby them because sometimes we're being criticized for being log-based of the industry. I always say, I'm a lobbyist to the industry because I want them to do things we want. And that's why you need to understand how they work. Some industry people in the room. Advocacy tools and best practice and that's the third pillar. The... Huh? Good. Advocacy tools and best practice. These are the tools to grow your organization, your organization structurally and how you basically do that. How do you, as an organization, access, for example, medical publications? How do you access information that is relevant to patients? How do you access information about which centers in your country run a specific trial? How do you access information that you want to transform into patient information? And we know this is privileged information is sometimes not given to us as patient advocates. How do you run projects professionally? How do you do project management? How do you, for example, measure also the outcomes and how do you do budget planning? How do you present yourself and how do you present your organization, your communication skills? And also NGO governance. And I can tell you this has been a very bad experience in my advocacy life. There are a number of organizations. Governance has always been difficult because in good times you don't think about building rules and in bad times you suffer that you don't have them and you will never at this situation introduce good rules because everybody's across. And that's why I think about NGO governance very early and think about that the tasks and responsibilities are clear cut. So these are the three pillars and then basically there are three levels and of course everybody's starting at the bottom level because usually we are not trained for this. We come into advocacy because we have no clue and we are thrown into this for some reason. So there's a starter level, there's a medium level and there's an expert level. And of course over time you try to move people from the beginners to the medium and some people you try to develop to an expert level. And of course not everybody needs to know everything. You might think about a person like you have Kate who has huge experience in regulatory and but she's also started somewhere. And so you try to move people from step to step and the way you can actually think about it and education strategy is to say so what is out there because you cannot as an organization do all of these trainings yourself. But actually there are trainings out there. They're actually excellent resources and unfortunately not enough people are going there and not taking things then in action when they've been there. And I just want to say to mention some of the educational activities that I know of and that I really think are very good. I'm in the advocate development program on one hand that is very different this year than you had it last year. The EU party patient expert training course that's a very intensive course for a patient experts who want to be patient experts and they're being trained for 14 months on the course to understand the whole drug development life cycle from early development, clinical trials, pharmacovigilance, drug safety, risk benefit assessment, regulatory affairs, health technology assessment. So very technical course but some of MPF been part of this or are part of that today. Then the EU party toolbox and medicines R and D that's the same thing like on the course but broken down on a website so you can access it on EUparty.eu in nine languages. So if you want to understand what placebo is if you want to understand how what phase three clinical trial means or if you want to understand how the orphan drug committee at EMA works it's more than 3000 documents in that database where you can inform yourself in total about medicines drug development and medicines development or drug development. Then there's a Euro order summer school that's a couple of days every summer and I think they also now have a winter school or something like that. That's the rare disease umbrella organization. They do also do trainings and they do it mainly in the area of regulatory affairs but a very popular course every year and because MP is member of your orders I think you're also eligible for that course. Then the European patients forum they are disease in specific they are the umbrella of the umbrellas but they also run core and thematic capacity building programs on different topics every year and they also do regional training so look at the EPF website, EU-patient.eu. They also have training programs and they might have some in your region as well. And then smart start is something that's on the lowest level in the chart that I've shown that's more or less a course for starters in patient advocacy so that might be a course to get people that you want to build as successors that have just come into the organization they need to understand the basics of running an organization and doing communications and that's most likely going to happen again in autumn this year and it's going to be organized by the workgroup of European cancer patient umbrella or groups represented by SACOMA patients here on it. And then the ESO masterclass that's more for the medium and expert level. That's a school, no that's a course that takes place every year and has just taken place a couple of weeks ago and will be again sometime next year which is more sophisticated in terms of patient advocacy. There are many more, I mean I could do three screens of a list and it wouldn't help but it's just if you contact people from the NPE office or people like me or people that have been around for a while they might guide you to training or online trainings or whatever resources if you say I want to better understand this. I'm sure there's some kind of training somewhere which they can actually point you to. And then actually pick the battles you can win and think about your negotiation tactics. I think that's sometimes how we try to do advocacy. We're trying to slam our head through the wall and that's not always the best way to go somewhere. And sometimes we have a lot of anger, we have a lot of emotion to actually because we cannot bear how this works but you also need to think about the other side. You need to think about why should the other party give in, why should they actually give you influence on what their home turf is. Sometimes it's easier to go around that kind of block instead of trying to slam your head around or you need to think about how can you actually make the rock a bit softer. So there are things but sometimes we just pick battles we cannot win and that's also we need to think about. And that's a slide that I've actually nicked from the European School of Oncology of this master class that I mentioned that was a professional trainer on negotiation skills and it's been a whole 45 minute course but I just want to pick one slide of it because I found it so compelling and it's really like a cooking book for planning a negotiation when you go to a committee. Because before you go there you need to think about what is the outcome that you want to achieve and don't go out for the maximum think about what is a realistic outcome and think about the retreat outcome. So if I cannot get A what is the B result of it that you have a position to rear it back to that you're not going there and say only A and if I don't get that I'm angry and going home again you haven't won anything. So think about a retreat outcome. Consider the second position in this case it means try to put yourself into the shoes of the one you're negotiating with. Think about what their position is and what a win for them is or what a total lose for them would be. And think about what would be the resistance of the other side because if you understand that you can tailor that and you can start to anticipate what is going wrong. Then be clear with your reasoning the benefits the risk of the proposal you make and present additional evidence. That's why I say if you want to convince somebody and I could speak on evidence-based medicine for evidence-based advocacy for another 45 minutes and don't do that but do these kind of surveys. Try to ask a lot of patients and go there with some data and tell them this is what our patients think about it. And provide some proof for your position. And then of course make your delivering compelling. I mean there's a lot about communication skills. If you go there with a well-prepared presentation or paper or anything that's probably quite supportive then if you just go there and talk for 45 minutes when they ask you to introduce yourself. So try to package it the right way. Explore the barriers and resistance when they are resistant don't confront them. Try to give them some empathy for their position while you're still staying hard on your primary outcome or the retreat outcome. And also at the end try to ask them for commitment. I mean it's just I find that cookbook it's just told me a lot about what I do wrong at these kind of meetings sometimes because I just go there and try to slam my head through the wall and I mean some people know me well. Sophia is laughing and I knew that. I really I try to do that on the top right quite too often and it doesn't help I can tell you it just doesn't work but I try to do it still. So tactics. So in summary that's my last slide and then actually I'm between before dinner now I'm keeping you from dinner so I don't want to keep you forever. In summary what I think is a professional advocate it doesn't matter whether that advocate is a patient or a carer it doesn't matter whether that person is employed is being paid as a volunteer all these things don't matter it matters what people do and why they do it and how they do it. So to repeat advocates do your advocacy in a targeted evidence-based well educated and professional manner rather than just with a patient knows best attitude. With that I think that's the whole cookbook of becoming a professional patient advocate. Invest in your education I know that's always at the 25th hour it's hard to do a course it's hard to spend time on training it's hard to read the scientific paper where you don't understand 50% of it but it's worth because knowing that you're going to get the respect of the other party you're going to get the respect of the clinicians if you at least try to understand what this whole thing is about. Use existing tool and share your tool and consider your impact and outcome of what you do and sometimes think when you're being invited to a meeting are you doing that just to please someone? Are you doing that because it's nice to be there? What could you do in the eight hours that you could do at home instead of traveling to this meeting? So think about what is the impact and outcome of you doing whatever you do and if you think about it sometime more I think you can be a very professional very powerful advocate. With that I'm at the end of the presentation now open for questions. Thank you. Thank you. How much time do we have? I'm out of time already, is it Amar? We're out of time but I mean we can have a couple of questions if you would. And I'm there for dinner as well so you can ask me over dinner as well. Are there any questions? Or are there still energy and batteries after this long day? So thank you. As Yanni's joining for dinner you are very welcome to ask him at any time. He will be with us. Okay, so a big applause to you. Thank you very much Yanni. So thank you very much for Bibles of this very intensive day. I hope it has been helpful and useful for you. I just have a little remarks for today's and for tomorrow. First of all, I mean we have been stuck in this hotel for like two days. So today we'll go out to downtown Brussels to have a nice dinner, relax a little bit and so. So I ask everybody to be at the reception at half past seven because there will be two buses picking up us to go to the restaurant there in Brussels. So now you have a couple of hours to relax, to refresh and so on. I know some people is missing so if you see some of your colleagues who has gone to the room for something please tell them to be at half past seven. They're at the reception. There is another thing as I mentioned during the first day, you know, tomorrow we're going to hold the General Assembly. This is only for full members. But I'm asking you, especially those groups in which two delegates are attending, we're also holding this a yellow milio dosi session at 10 o'clock. So it would be great if you kind of speak because maybe this would be an area of your interest and it would be good to have some of you in there. Finally, and this is very important because we have the staff in there and they are not going to allow you to go out. You have your feedback forms in there so if you can just give us your feedback I think this will be highly appreciated. Some of you have been telling us very good ideas and very good suggestions during the meeting so if you can put them by writing and also evaluating us it would be great so we can improve in our next AGMs. For tomorrow the checkout time is 12 o'clock so maybe you will have time to do the checkout at the little coffee break that is at quarter past 11 I think if I don't remember wrong but please make sure that you check out before 12 o'clock. And finally for some of you my colleague Ana Robira is down there. For the General Assembly we need the official address of all the members attending. Some of you already gave it to her but some of you are already missing so if you can please contact her at the back of the room. Just to make sure we have your official address this is needed because as you know we are signing the new constitution in the notary on Monday here in Belgium and we really need to have this information. And that's all so thank you very much. I hope you enjoyed this day and we see each other at half past seven to have a nice time in Brussels. Thank you.