 So, Ms. Tank. Okay, thank you. So, like I was saying, we're going to move to the next session, the program. Due to this last-minute issue, we're going to change the session and we're going to start with the scholarship and capacity building program session. So, for that, I would first would like to invite, as you know, I send you, sorry for the tons of emails I have been sending you over the last weeks, but there was one in which I was requesting those of you who wanted to show some of your activities you were doing in your countries and present here into the AGM. So, there were four brave people that accepted to do that. So, I would like to invite to the stage to Daniel, Nikita, Varda and Cristina now. So, if you can just come up to the stage, please. And also, if it's possible now to have the headsets. Okay, good. So, just as a little intro... Oh, well, one thing before starting that, as Hanson and Ananda said, please feel free to use the... For those of you who asked Twitter to use the hashtag NPE AGM 2018, I know I'm very handsome, but I don't want to see my picture there for the whole weekend. So, just try to twist them on first things, because when I went to the back of the room, I was a little bit scared. Just look at me smelling. It was kind of wet. So, please, twist. Yeah, yeah, yeah, just sitting here and also Cristina, yeah. So, as I was saying, you know, we in NPE two years ago, we were thinking about how we could really do one of the main goals that we have in the DNA of our organization, which was basically helping you to build capacity, to develop your skills in order to support better the patients in your own countries. As you know, in our position as a European umbrella, sometimes it's difficult to have a direct impact on patients. We were sometimes working in fields such as access, research and development, which certainly has an impact for the broader community, but we are not so many in touch. And you are the ones who really in your countries are doing all a great work of supporting, informing, educating patients and all these kinds of stuff. And for this reason, in 2016, we decided to develop this capacity building program, which mainly two aims. The first of them, as I said, was giving you some training on those topics that you find useful or beneficial for the myeloma community. And at the same time, even though our budget is limited, giving you a little economical support, so in these two years, we have been able to deliver above 20 grants, more than 60,000 euros. And you have been running some wonderful programs and activities in your own countries, which I think is great. And we're going to keep on doing that. But before, what we wanted to do today is to invite you, and in this case, these four brave advocates, to present the work they have been doing in their own countries to serve as an example, as a spirit exchange. And also, just to let you know that this year we have opened again this program, we are providing 15 grants for those of you who have any kind of program that probably would like to run in your countries. I know some of you have already been granted. I know, Lisa, you have been running this wonderful initiative on the clinical trial search registry in Germany. Lucica, you were holding this panel with multiple stakeholders in Romania. So this is open for you. And just please feel free to apply for a grant and for the training because we will be happy to support you in any manner that we can. And being said that, I'm going to give the floor to these four for friends and advocates to explain what they have been doing in the countries. So first of all, I would like to introduce Daniel, who is going to talk as about the project, the name of the game that they have been running in the Amelie Dosis Israel Organization. So please, the floor is yours. Hello everybody, I already said my name is Daniel Dreamer and I'm the chair of the Amelie Dosis Israel Association. I myself also am an Amelie Dosis patient for nine years. We represent about 80 patients of Amelie Dosis, both AL and familiar Amelie Dosis in Israel. So it's a real pleasure to sit in front of you and talk about our organization. And I will start with a kind of metaphor. So this word describes what we need in order to go on with supporting the Amelie Dosis patients community back in Israel. So now let's make a little game. Let's imagine that our city is attacked by the enemy and bombed. It's not nice, but we as a government, what would be our priorities dealing with this situation? And now it's randomly arranged, maybe run workshops for mental support of the population, organize meetings and give speeches about the patriotic reason to endure the harsh situation, teach the population to hide from bombs and so on and so forth, stop the bombs falling. And this is really randomly arranged. It's not the right prioritizing way to do it. Going back to Amelie Dosis and our association, I would say that the enemy is Amelie Dosis. The bombs falling in my opinion are faulty diagnostic treatment of the disease. So the right priority should be stops the bombs falling. What I mean is we have to do the right diagnostic of the disease, which is lacking for now. It's not so good. And how do we do it? By enhancing knowledge and test facilities for physicians. And this is our ongoing activity in the past and the present and in the future too. Teach the population to hide from bombs means this patient will be proactive in dealing with the disease. Somebody talked about it a couple of minutes ago. It means that because it's such a rare disease, if people are not caring about themselves and keeping track of all their tests and asking the right question, it is not good. I mean, it's not enough a good doctor, but the patient should be his own advocate. We're running workshops for mental support of the organization of the patients. Trying to have as many drugs for Amelie Dosis paid by the medical insurance. Teach patients to see the half full glass instead of the half empty glass, which is very important to be optimistic and not have only bad thoughts. One of the surveys made in 2015 showed that on 443 patients showed that 230 hematologists and 220 cardiologists missed the diagnosis. So each patient had to go through at least four MDs to get the right diagnosis, which is a very bad statistic. So let's go to the basic assumption of our organization. The rare disease is the fewer physicians who can diagnose it or treat it. It's a matter of practice and if you don't see a large number of patients really a physician doesn't have an exact procedure how to deal with every patient because every patient is different from another patient. Second rule is to have a good relation with an excellent center wherever it is in the world, like in Italy, England or USA. We keep in touch with most of the physicians in MDs dealing with the disease in Israel trying to help them to give them more knowledge about the disease and trying to have the most veteran position which is the best to teach the younger ones. Trying to also to connect the physicians in Israel to excellent centers where they have much more experience like the center in Italy which sees about two or three thousand patients a year and in Israel the most experienced center maybe has 20 or 30 patients per year. And try to create a forum of MDs that will talk together like every month or two and discuss only about the disease. The main thing we think about was the saying of an ancient Jewish rabbi that said that if I'm not for myself then who will be for me? So actually if the patient doesn't help himself nobody will help him. It's the most important motto or sentence about the amyloidosis patients. I think that everyone, at least one member or two members of the organization should learn the disease in depth and to be an advisor for all other patients whoever calls and give him the right advice but it doesn't mean that the patients themselves don't have to learn about as much as possible about the disease. They have to keep track of all the results because doctors don't have the time to track. I mean they are tracking the results but not looking at them so patients should have to see all the results and see if the numbers and the critical tests are going up or down and talking to the MDs. Also patients have to be very assertive in meetings with MDs and ask the right questions and even argue if necessary. And be in touch with an excellent center. That's it. I'll try to do it as short as possible. We could talk about it much more time. But thank you. Thanks, Daniel. So for the next one I would like to invite to the floor to Cristina Modic from LNL from the Slovenian group and she's going to talk to us about these rehabilitation programs in Slovenia. Thank you. Hello again. As I told you I'm representing Slovenian lymphoma and leukemia patient association where we also connecting myeloma patients. I'd like to present to you our new huge running pilot program comprehensive rehabilitation for blood cancer patients. But first of all let's start to say about the project starting point. Blood cancer patients have for sure significant need for the comprehensive rehabilitation during and after treatment. And patients in Slovenia have poor accessibility to comprehensive rehabilitation and systematic organized rehabilitation. It's quite a problem in our country. And we know that significant need of patients that is significant need of patients for physical, nutrition and psychological support and counseling. And in May 2017 we got a huge opportunity because our Ministry of Health published a public tender for the period of 2017 to 2019 on the field of the rehabilitation comprehensive care and then we apply with our pilot program and we won. For two years we want 100,000 euros for this program and we were really very happy because we can start it. What are the benefits of this program for the patients? The systematically organized comprehensive care and rehabilitation prevents or successfully eliminates additional problems caused by aggressive treatment and significantly increase the patient's quality of life during and after treatment. What is very important not just after treatment but also during treatment as well as aids them in successfully returning to their social and working environment. Who are the program implementers? The program leader is our association. Our huge partner is association of hematologists of Slovenia. We prepare the pilot program together and also we work on this program now and running program together. Our direct implementers of the program are hematologists, also some oncologists, nurses, physiotherapists, kinesiologists, clinical dietician, clinical psychologist, social worker, and of course our lay advisors. The program as I said is co-financed by the Ministry of Health and by the pharma companies and as you will see further on we are starting with huge campaign awareness campaign in Slovenia and we will ask also our public to help us with this pilot program. Who can join the program? The program can join patients with certain types of blood cancer who are in the process of active treatment. Those are patients with myeloma, lymphoma, CLL and AML and patients after the bone marrow transplantation. Each patient stays in the program for six months and right now from October till now we have 27 patients involved in the program and 13 of those are patients with myeloma. Every Monday two new patients joined the program and of course one or two left the program because they finished the program. What are the program goals? One goal is empowerment of 120 patients in the period of two years. Better outcome of the treatment of those patients, faster recovery, better quality of life of the patients and making it easier to return to the social and working environment. And of course less sick lives due to the treatment consequences when they get back to the work. The program consists three modules. One is physical module. It means that patients go and have a regular physical group exercising with physiotherapists or kinesiologists. It depends on the patient, from patient to patient. They have also exercise at home every day and make and record everything. Then we have nutrition module. It means assessment of the nutritional status of each patient and patient get a nutrition plan with ongoing monitoring. So everything is monitoring from time to time. And then we have a psychosocial module. It means assessment of psychosocial status. Patients have tests and conversation with clinical psychologist and then patient join support group. We also have some other forums of counseling for patients to support all three modules. It means that we have regular monthly group consultation with experts, some kind of workshops on the topic of the nutrition, physical activities, psychosocial status. And of course also the management of the problems which are caused by treatment or recovery. And then patients can get also individual consultations with experts if they need it. And consultation with our program coordinator who is my colleague Brina. I can say lead this program and coordinate this program and if you will have any questions you can give it to me and also to my colleague Brina. What are all activities for one patient? They have to be very active. They have to follow the instruction of the clinical dietician regarding diet. They have to visit physical group exercise once a week and of course they have to exercise at home every day. They have to visit workshops with experts and then they have to visit a group consultation with a psychologist once a month. And what is very important they have to keep a daily and record all the observations. You can see our daily here on the picture and on the picture you can see a small group of our patients when they have their exercising. If necessary they make, as I said, they make individual consultation with experts and they keep in regular contact with our coordinator Brina. To make some conclusions, comprehensive rehabilitation for patients with blast cancer is extremely needed and has a great value to treatment outcomes and patients quality of life. Comprehensive rehabilitation is currently available only in Slovenia, I mean, is available only for limited number of patients with specific blood cancer types under the pilot program and we expect that the results of the pilot program will demonstrate the importance and need of rehabilitation for the patients and for the treatment outcome and quality of life of the patients and quicker return to work environment. And when the pilot program finished we will strive for availability of this program also for all patients with blood cancer in the whole Slovenia and finally also for all patients with cancer in Slovenia. And as I told you, we would like to support our pilot program to be effective and to give really good results and we need some more money. So in May we are starting with huge awareness campaign and fundraising campaign in Slovenia back to life and we are asking our public, Slovenian public to help patients with blood cancers back to life and we will ask them to give five euro for this program and we are sure that we will have success and we will reach all of our goals of our program. This is working, this is not a final version but I can show it with you and this is a man who would like to have his life back with his family and I think that we will have a good success also with the campaign and with the program. So thank you very much. Okay, so our next speaker is going to be Barda, if I'm correct. She's going to present us about this program I think you apply for the capacity building program and this is one of your programs so it's about the responsible patient so Barda, you are welcome to have the floor. Thank you. If I'm at second. Yeah, I mean the template is the same but I think this is yours. Oh, sorry, this is, no, no, sorry. This is Nikita, sorry. They were both using the same slide. So Nikita, I give you the floor. Barda, you want to present that. Yes, but I think that we are very close and empowering at least is a key word of next presentation. So my experience in hematology is very impressive for my life and I'm excited of its success and problems. And I found that the main problem is responsibility of the patient. There is no other way to empower patients than to give them understanding that they have to do their, not only their life by themselves but also their medical records. They have to take in their hands medical records and there is no reason to sacrifice medical doctor mission. It's simple human behavior to use reasonable intellectual algorithm as it's name now to fulfill case history and we have to inspire person to be partner in this work. In Russia during my practice we have dramatic period of losing paper medical records and to enter in dramatic period of mixed documentation both in paper and in electron. It make situation much more difficult and now I told you that we have lawyer with me. Doctors doesn't want to write to fulfill medical records because they afraid to be, to have problem with law because official organization, our administration is looking for process against doctor to make society, to ensure society that they are very caring about them and that they are very strong, strongly defend their life against the doctors. It's very difficult and painful situation. So what we have to do now we have to use new technologies and it's certainly, I don't remember what is there, it's smartphone. Next generation of human beings will have all their problems, all their disease, their aging and their death with smartphone in their hands. It's the main instrument of life. So we think that via this instrument we have to teach patients to participate in their medical history. And this, the problem is how to involve patients and how to involve doctors who, as I told you, are afraid to write. They prefer to speak with patients through telephone and they imagine that these words disappeared in air. But it's not true again. So we started with most perspective patient as we thought with diabetic patient and with pregnant women. This group are younger and they expect to be interested in monitoring their vital sign of disease. But it's also not very simple. So I think that though we have not very successful history with patients of my hospital of National Center of Hematology, that now we should return to them and try to inspire serious but already using computer equipment, patient with myeloma to follow and monitoring their own vital signs which is protein level and immunochemistry of serum and urine. It's very important and clear signs and misdiagnostic which we discuss is the reason it happens because doctors not recognize the high level of protein in urine as reason for immunochemistry. In Russia still we have the only high level laboratory in our center. It all happened in my eyes. Then great scientist, I believe, the person who opened the first cancer-specific protein, alfalfeta protein, he created for us the technique of immunochemistry concentration of myeloma-specific proteins. And now it's work but it's the only laboratory in the country. So the problem is how to involve patients. I think that it's one of the main problem of all patient organization. It's the instrument we can give to any person because to write text is the most human behavior in the world. We have one independent journalist in Russia, Dmitry Byakov. He is very aggressive for government and very reactive to events but he also created eternal phrase, I think. He wrote that God created human being to have something to read. You understand? All the text in the world except DNA written by human being. And God is interesting. So I think that now our main goal is to present to God our medical records. Please help us. So I'll be happy to present to send you all my text but you see that I told you practically all what have been written here. And this instrument also have, you see about, I think that I didn't, this is our classic picture we did on Excel 20 years ago and it's the still picture how we imagine modern case history should be. So we, as Google map, we should have all data integrated in one vision and doctor and patient should recognize situation by recognizing of picture, image of disease. So I'll send you the modern picture. They are not so beautiful but they have automatic monitoring of blood, sugar of pulse of different simple signs of health but we have to add our blood patient monitoring events as well. So please do it for your patients, for your people, for your friends and for yourself. You have to understand that now the only creature who will take care about your all life long medical history is you. I can tell that such behavior possible because in my experience there is great doctors who takes care of their patient during all their life, during all their disease. It was possible in previous stage of human culture but now it became much more complex, much more data and each person have to do it by himself. Good luck. Thank you. Thank you very much, Nikita. And last but not least, now I'm correct, I'm inviting to the floor to Vada who is talking about the worst foreign power in the patient. Hi everybody, many familiar faces and I feel like we are really one big family. Just to give you a little bit introduction about amen. Amen is the only Mi'aloma organization in Israel which established in 2005. We are doing a lot of activities for our patients and one area that we are covering is support groups for our patients which we hold in three different geographical areas every month. In these groups they meet each other, they mingle with each other and they have some professionally lecture like from a doctor or other related area. And we have also the hotline which is activated by our patients. And we understood over the years that there is a need for a special workshop, especially for new patients for patients that are going to relapse. And we decided that we will establish a special workshop for them because we have limited budget. We identify some members from our patients which went through the facilitators, as I said, there are many staff members that went through a seminar. And this seminar was based on the WCC model. It's an integrative intervention model that talks about the family, medical approach, the practice approach and the approach developed by the wellness community. We established a special workshop which is for patients and their caregivers. Also caregivers are coming for this workshop. We have about a group, each seminar is for about 14 to 16 people. It's a very small group. They are going through six sessions, three hours every session. We publish the publication of this workshop through our Facebook group, through a website, through emails. And right now, up to now, we maintain the two seminars and the third one we starting this month. The main idea of this program is to provide our Mialoma patients and their families tools to cope with this chronic disease, to improve their quality of life and to teach them how to manage the disease. When I talk about how to manage the disease, our former head of board of a man, she always said, I want to manage my disease, that the disease is not managing my life. And this is the point. We teach our patients how to read the blood test and all other tests. We teach them how to ask the right questions from the physician and how to get all the information that they need because we believe that patients that control their disease, that they take, they manage their disease, they feel much better because they feel they can control the situation. The second topic that we are going over in this seminar is all the topic of the side effects. As we know, there are many side effects and not always the doctor has the time to go with the patient about all the side effects and we talk about the area, we talk about neuropathia, thrombosis, rash, fatigue, anemia and all these side effects that you know about them. And we think it's very important that somebody will tell them what they are going to go through and to talk with experienced people that went over it already. All the topic of interpersonal relationship, the connection, we believe that there is a connection between the body and the soul and that the patients need a lot of support from the family and the surrounding, along the disease. And the sense of feeling belonging is something that don't let them feel lonely and we believe that all the activities that they should continue alongside the disease. Another topic is the relationship with the workforce. This topic is relevant for people which are in their 30s, 40s, 50s and it's a very important topic. In Israel we have an NGO which is called Kergiverse and one of the missions is to go to different workplaces and talk with the people there and build a special program not only for the patients but also for the caregivers. We believe that our patients have need to make their boss a partner for their disease in order to be able to build a new routine and to continue to work which is very important. The other topic is all the relationship with the kids, how to tell the kids, how to deal with their parents, how to deal with your body which is another topic that this seminar is dealing with. And all the area of nutrition, sport, hobbies and other activities that the patient should do in order to go back to kind of routine. Now, the outcomes. We already had about, I guess, 30 people that went through this seminar and what they told us that there is a significant change in their mental state once they began to take control of their disease and they learned how to cope with this chronic situation and they helped themselves to go to a new routine they felt much better. And also, they learned a lot from each other and they got support to get more support from their family and not to be lonely with the disease. The next actions, we are going to hold like three seminars each year in three, in different geographical areas. We want to make meetings of those that graduated from this program to meet with them like once in a quarter. We understand today that we have to hold separate meeting for caregivers and this is our next mission to have some separate seminars for caregivers. We need to train more facilitators and these facilitators, we believe, have to be myeloma patients. And that's what we do right now. We try to identify more volunteers to lead these and other activities. Just some pictures. Here you see Shlomit. Shlomit is one of our facilitators. And Shoshi, she is also from our board. And these two people after the session made themselves new shirts. As you see multiple myeloma, love, we believe, faith, courage, all these words. Thanks. Thank you very much, Rada. Thank you very much, all of you. So before we are proceeding with this open discussion and this dialogue, I would like to ask you the audience, if you have any questions or something that you'd like to share. Yes, this might be the moment. I have a question for you. What did you decide to split between myeloma patients and caregivers? What was the need to do two different meetings? Or I didn't understand well. Yeah, you understood correctly. In this empowerment seminar, we invite also caregivers, but we understood that we need to do separate meetings. Another doesn't connect to this seminar for caregivers, because caregivers cannot talk about all these issues, all the issues next to the patients and they believe that they need different sessions. So we are going. Yeah. Caregivers told us that they feel they can't talk about their own difficulties in front of the patients. They are trying to save. They feel that they don't see themselves. They don't see their own difficulties. And when they feel it, they don't dare to put it on the table. So we realize that if we will give them a special seminar for them, they will be able to speak to open everything and to put on the table all their difficulties. It's not instead this seminar. It's something additional seminar that we are trying to establish right now. Is there any other question? Yeah. It was really wonderful to hear the presentations and I'm very happy to see that so much is going on when it comes to cancer rehabilitation in the blood field because there is a huge need. And I was curious, Cristina, about your experience because you mixed several diagnoses, some that might be chronicle and some that are curable. And what is your experience with mixing that? Because we had a training program in Norway for younger blood cancer patients where we had all our diagnosis together and we saw that it was difficult for those with multiple maloma who had a shorter life-horizont to be together with those who are struggling with severe side effects, for instance, from GDHD from heavy treatment because it was two different worlds. What's your experience? Maybe my colleague Brina will later on talk more about it because she is all the time in the connection with the patients. But now, in the first six months, we had mostly chronicle patients. So they have quite similar needs. But now, I think, we have two young patients also with Hodgkin lymphoma and it's, yeah, it's different. But we'll see what will happen during this pilot program and we are recording all our outcomes and we'll see. Maybe, I don't know, Brina, do you have some different, some experience? It's, you know, it's first six months, so we have mostly patients with maloma chronicle lymphocytic leukemia and lymphoma. Yeah, the younger one just entered the program, so we don't have so much experience yet, but we will see. I think that maybe in the future we could split, but now it's the same program for different diagnosis. Any more questions in the room? Oh, yeah. Well, thank you all for your interesting presentation. I have a question for both Israeli and Asian patient groups. Just curious, do you work also together as both patient groups, for example, in meetings in Israel for patients? I think the simple answer is no. Sorry to say that, but no. No, it's just curious. The amyloidosis organization just was established like last year, no? No. A year ago. November 2016. Yeah, okay, a year ago. We talk about it, not yet. We didn't any collaboration yet, but we will do. Okay, thank you. Yeah, Sofia also there. Just to add that thanks to the weather, we'll have a very nice cocktail reception in the terrace. This might be the beginning of a new friendship. Christine, I think your program is fabulous. And it's one of the issues that our newborn association is dealing with. It's the back to life problem. So I'm really thrilled with everything that you have presented. And I didn't really get, if this back to life campaign, fundraising campaign, you have already done it, or you're preparing it for fundraising? We will start in May. In May? Yes, in the middle of May. Can you explain a little more about how you're going to address, who are you going to address, this fundraising campaign, which is amazing because you're not addressing for a certain disease, just going to address for back to life in cancer, which is something really amazing. We would like to aware how important is rehabilitation for the patients with blood cancer, but not so with blood cancer for all patients, because me, you, everybody will need rehabilitation in our life. So we will ask people to help us with this pilot program to support cancer patients in this program, because together we will do for all of us a lot, because if this pilot program will be successful, will show, will show good results, then it will be applicable, you know, in other cancers, in other chronic diseases. So this is the goal. And our agency is preparing a very good communication campaign. So we'll have very focused communication, very, you know, touchable communication. And we are sure that almost every Slovene will donate five euros for this program. Yes, yes, general public campaign. Yes, from 18 years till 99. So we are focused to all. What are the expectations? Now we get from the Ministry of Health, we get 110,000 euros, and we need additional 50,000 for two years. So we are sure that we'll succeed. Good. Is there another question there, Tony? I have another question, because this program is so wonderful, Christina, that you're telling us about. But I was wondering in your country or in the other countries who are represented on stage, what kind of focus is it on cancer rehabilitation from the public that's offered to cancer patients? Is it so that there is none? So it's up to patient organization to arrange it as you're doing, or how is it? How does it look? As I told, the problem in Slovenia is that we don't have systematically organized rehabilitation for blood cancer patients. And we started together with the Society of Hematologists of Slovenia, this pilot program, to show that it's important. It's a big need. So we started, yes. I don't know, how is Young in your country part of the treatment program? Well, we have been working together with people, different nurses and different doctors and researchers who are involved with cancer rehabilitation because in Norway there is a lot of offer when it comes to rehabilitation. But when it comes to cancer rehabilitation, it's a rather new field. And there really isn't very much specific for blood cancer patients. But what we have tried to do is to make a scoring system to determine which blood cancer patient needs rehabilitation because so far in Norway it's been very random who actually gets help and who doesn't. So if you've been lucky talking to somebody and you say, oh, does rehabilitation exist? I didn't know, I thought it was this for older people with hip problems. So that means that the world is out there but there is no systematic. So we try to bring systematic and there is no research going on at the largest hospital in Oslo. And also we hope that this way, this tool to sort of determine who needs rehabilitation will put a pressure on the governments to say that we really need to build up, we need special care for these patients because the treatment is so heavy and it takes such a long time for people to return back to normal life. And also you could save money. A lot of studies have shown giving people rehabilitation because they come earlier to work and people who are old who doesn't go back to work they could be more self-sufficient back home so they don't need that much public help anymore. Yes. All right. Sophie, I know, no problem, that's good. To you, Christina, sorry. So how did you choose the patients engaged in this pilot study? Was that the hematologists? Yes, the hematologists say they chose the patients. This one is the right one. And then the patient come every Monday we have these consultations for the patients and then patient come has we need two hours for one patient to measure his physical ability or how to say then measure their nutritionist and the others. And then when we have all the tests and all the records our hematologists say yes, he's for the program or no, he's, for example, too bad to go to exercising. But in the future after the pilot ended and you are going to implement it in a further, in a broader way how are you going to engage the patients? What's your idea? Our idea is that it's organized systematically like a Tune essay. You know that every doctor always through the doctors. Yes, always through the doctors. Thank you. The Roman. Again, Christina. It will be not a question. It will be that confirmation. I did alone what you propose for the patient. And my doctor, I am so happy so this necessity to force a patient to work. As you said that you have to take care about you as a first person. And I've never felt so good as now. I have my personal training. I didn't know that I am Myeloma patient maybe 10 years, 15 years ago. I wasn't so happy with my body as it is now. I can lift 100 kilograms. I have my broken back bones and Myeloma in my bones in my hips, but I can manage it. So this is the right information, I think. We accept this confirmation. Follow you. Maybe Brena told you two patients are finished. How successful was the program? Brena, can you in few words? Because Brena is really all the time in the contact with patients, with experts. The two patients that already finished they showed an increase in hand griff in every measurable numbers from a physiiatric test and they really felt better. They said they had better quality of life and also the psychological tests were better and one of the patients finished the program as he finished the treatment but still got better results. So it was really it really showed that the program is effective. And everything is evident based. We measured everything, so it's not just I feel good. We really wanted to have this test in the beginning and in the end, so we can really show the difference and the founders that it's really effective. The comparison from the beginning and at the end. Good. Oh yeah, Biba. I'm sorry for Anna, because she's massive. Anna, yeah. My question is congratulations for all that you're doing. It's very hard and we know that. But my question is we all know that the psychosocial support is very important in a cure but are you struggling, each of you in your country, with the access to new treatments because we can support we can give psychosocial support to the patient but the first thing is treatment. In Macedonia, we are struggling with the new treatment access to treatments. We are working on psychosocial support but my question is how you manage that in your countries? I think it's a different topic that the MP plans to talk about it later but we didn't talk here about access to drugs because it's a big it's another area of all but we talk about all the other things that we can do next or besides the treatment itself. I think everybody has a problem in Slovenia and we're doing a lot of activities I know that we in Israel plan to show you what we do as far as access to treatment but it will be a thing only tomorrow. I can say for Slovenia we don't have any problems till now with the access to new treatments we are up to date and that's why we can care such projects we are upgrading care comprehensive care rehabilitation because we don't have problems with access to treatment so we are happy and hopefully it will stay like this for a long time. About Russia we are not happy but I can say the story of access for new treatment because my chief was director of the national center and leader of the hematology when Glyvek arrives you know it's the first drug for new treatment and he accepted from the company drug for 150 patients and then company say well it's time to pay and my chief called to minister of health say hey brother you have problem you can't execute these people you should kill them to put them in prison it's not enough treatment it's the death so please take care and minister of health it was such person it was first minister of health not physician in Russia he was good enough to accept this proposal and next step was with factor 8 for hemophilia patients it was very expensive as well treatment and also my chief send patients to parliament and say they will climb on their broken legs to you if you are not support the program and now we have dramatic change because government in all disgusting problem of our country paying 2 billion dollars for program of new innovative drugs and all active patients able to get it it's very strange and it's story of single patient single person who forced it and then groups of course pharmacy supported and patient organization it's great story are there any more questions someone wants to ask something else I will then make one maybe first to you but it's open to everyone first of all I am quite amazed about the great activities you are developing I know some of you are also working and very good activities and I was wondering from our position the role of MP what do you think are the most challenging needs that the myeloma and the amyloidosis community has and how do you think an umbrella like MP can support and help you to run programs and activities to solve these some food for thought if someone from the audience wants to participate maybe from the amyloidosis point of view is mainly raising the enhancement of the knowledge of the MDs it's a problem I mean we are trying to do it all the time but something maybe you know they are the same doctors the doctors dealing with amyloidosis and with myeloma but myeloma is not so rare like amyloidosis and it's maybe easier to diagnose than amyloidosis so here is something which the big organization like MP can help us in achieving this goal in that sense I take the chance to inform all of you on Sunday there will be the General Assembly which is for full members only but in parallel we are running a session on amyloidosis and also we are having a panel to see how MP can help the amyloidosis community in some kind of way as you many of you know amyloidosis and myeloma are quite well linked so I would just propose especially for those members who are attending maybe you can split between the General Assembly and the amyloidosis session because this is something that also has an impact for myeloma patients and in that sense it will be great to show what we are planning to do for MP but also to hear from you to see exactly because we are quite new in the field and one more thing is that actually 50% of the myeloma patients will be sooner or later amyloidosis so we have a lot of common things that's it I think that Rabbi was right if you are not for yourself nobody can help you and our patient is awaked people they understand that their life is very expensive but all of them practically in reality wants to live you know it was in the beginning of Perestroika it was a lot of more freedom and discussion discussion about health doctors help murdering euthanasia and journalists came to our institute and say hey we have freedom for you to die let's give it to your patient and I say well go to our animation and ask them they all want to inspire once more it's the human being there is no people they want to stop respiration in reality it's so done so I think that we have to help people to continue it's our mission any final remark before closing the session Hans just want to make one comment on what you said to raise awareness also to the medical doctors about the relation between and myeloma well I must say we are in close contact especially since last year with the European medical doctor group who are focused on myeloma I mentioned in my introduction that has also a congress at the moment but in Torino and they have also quite similar program like we have a myeloma program and also an AL amelodosis program and they have there we had preparing discussion also with them just a day before our meeting and in 2020 they will have their next meeting and we discussed if we could combine things more so we are developing more and more pretty close connections with the leading medical doctors in Europe at the moment also on the AL amelodosis side may I have comment foreign training was in M.D. Anderson cancer center in United States in 1989 I jumped there and they found that they have such size of case history enormous I expected that I find something unbelievable but there was only accounts money money money about how many but I found the real concentration of interesting and very inspiring information it was letters of treatment doctor to those who primary doctors who sent the patient the problem that there was slightly adhesive because they were very sweet and it was difficult to open it but information was very precisely strictly described and the situation of patient was presented in very interesting and complex way so I think that it's very important channel from specialists who treat patient they have to return them to their primary doctor with thanks and with respect to their action that they sent them and to ensure that if they will do the same they will save life and it's their responsibility that they did it so let's inspire specialists to return their success and to share their success with primary doctors I think that it's important way okay so it seems that we have reached the final of the session I would really like to thank Daniel, Vada, Nikita and Christina for your contributions now we're going to have a coffee break which is going to be set up the outside of the room just to give you an update we are still trying I was not just looking on Facebook and Twitter we're just communicating with my colleague Anna because we're still holding for the doctor to see whether she might be available for the next session or not we'll probably extend the coffee break for half an hour instead of 50 minutes if it's possible to have the session we will let you know so thank you very much, thanks