my responsibility as a journalist is to get beyond the smoking mirrors it's not just about the fear and balance or being neutral it's about being truthful. when he was born golf and i were you know with. the ice bucket challenge in two thousand and fourteen people all over the world were pouring ice water over their heads in a bid to focus more medical research on the rare motor neuron disease a unless. they posted the videos on social networks and raised millions in private donations scientists took note they'd seen how their laboratories and the public could be just a click apart. what would you rather we didn't have the stink of dust i think we

can now invent new drugs faster i fin and then i believe that there's so much more that we can deal. with wide public support medical researchers can tackle diseases at the pharmaceutical industry overlooks. in the land of social media cats rule one of their stars is low but she looks a bit unique but she was exactly what to molecular biologists from berlin were searching for. now for the first time we'll be able to understand all the secrets. even you know what. the. scientists daniel sieberg a majority of the pianists worked. the max planck institute for molecular genetics

. one night i was on the internet and this cat documentary came up in my recommendations and one of the cats they showed was a little bug and they said she has six toes which was interesting to me but i've seen that before and then they said the cat's also small because she's got weird bones which means this cat has both a limb out from ation and the bone malformation it's i thought this can't be happening it doesn't come if. this is precisely the true scientists specialty they deal with hereditary diseases. and this interview in the next day i went to daria and said you have to see this cat you won't believe what she's got of we knew that there are genetic mutations that cause limit from actions and also mutations that cause bone malformations but i've never seen a combination of the two so i figured the best thing to do was to sequence that which is our specialty but it was totally amazing that something we normally do in

our institute which makes most of our friends yawn was related to something that interests millions of people you mentioned they set out to decipher the famous catch genome but laboratory analysis is expensive so the two researchers moved to make use of little bubs high profile the tiny town of living. with over two hundred thousand you tube subscribers and three million likes on facebook the feline reaches a vast number of people. social celebrity we wanted to do abroad you've got not only us but kind of getting also the fun or people a common interest in understanding what is behind the certain features that need us . little bubs owner mike radomski was thrilled for him his cat stardom was never an end in itself. when she started getting favors i mean it's

a pretty strict rules. if we're going to do this that there should be some sort of message attach where there is are you know reached out. three x. . the berlin researchers launched a crowdfunding campaign in two thousand and fifteen crowdfunding draws on the vast number of people using the internet. the cats fans were able to donate small sums to the crowd funding platform the scientists needed a total of sixty five hundred dollars to cover part of the research costs. but people donated even more and in the end it brought in over eighty two hundred dollars. now the real research could begin. so normally what happens you know because. you basically work in the lab for i

think two or three years and then you keep your results and then the same then you basically release all your results we can reform these are completely different experience because first you can get engaged socially with the people that theme that actually your research interest and then doing the entire process you can communicate with them. the money for a little bubs genome decryption came together within a month mike sent a sample of the cats blood to berlin abraham and his colleagues captured the most. meant for the donors. to find anywhere secretly but you know. staying in touch with the public was a completely new task for the researchers suddenly they themselves were the focus of an audience but it also gave them an opportunity to make science more transparent. we are going to try and do on this done hello how did you know

function on an hollow and duration that you know can lead to human disease. the analysis found that little bug was suffering from an unusual accumulation of genetic mutations. osteo patro cysts a rare bone disease where the bone tissue becomes considerably more dense was the most obvious she also had how they dr lee hands her six claws. as humans can be born with surplus fingers and toes as well little bubs genome could help understand these rare hereditary diseases better in the future. as it comes on crowd funding could be a good way to enable research into a particular rare disease because that doesn't happen a lot otherwise funding agencies give a lot of money to medical research but it's often difficult to get money for rare diseases off of me so i'm for. crowd funding as a way of enabling research that might otherwise not happen. but i'm sure the bus

huskies some vision that nobody has discovered before the study of the said machine gun. information that we have not seen previously before a note or another all those this ancient. new forms of research funding are particularly needed when no one else is investing hardly. anyone knows this better than the people at access to the alliance of chronic rare diseases we're meeting christina and loss. with the voice of those affected by red diseases. that affects some four million people in germany alone but few of them suffer from the same rare disease. doesn't done in american terms that's normally a few thousand people but it can also be only

a handful of patients worldwide get. patients like josefina shots who's ten years old today. she was born with swellings and a heart defect. her parents went from doctor to doctor but no one could give them an answer it took eighteen months to get a diagnosis josefina has a rare genetic disorder williams syndrome but she still has a normal life expectancy has it if you're affected by red aziz it means first and foremost that you have to search parents tell us what an enormous burden it is for them to know that something is wrong with their child and not get an answer as to what it means and where it leads. which is when. the pharmaceutical industry focuses on the development of therapies for common diseases secret tom from the association of research based pharmaceutical companies says this is the right approach for i'm broadly thirty for now nobody is

responsible for basic research we have a total of thirty thousand diseases six to eight thousand of them are rare in view of that i think it's obvious that the pharmaceutical industry cannot tackle all diseases at the same time like. on research spending by governments in the pharmaceutical sector has been rising for years there amis to achieve the e.u.'s lisbon target of three percent of gross domestic product germany austria and switzerland together invest about one hundred. twenty billion euros in research and development every year. however those affected by rare diseases do not automatically benefit the pharmaceutical industry applies a simple formula. you know if you history class how common or how rare is the disease he is there any basic research that shows how it could be treated. or can and can we expect research into it to pay off at some point. but i think. i

was taught. many people affected by rare diseases a hope for new drugs or gene therapies but it's a complex process scientists must first find and develop an active substance that they tested on animals so as not to endanger humans. these studies alone often take years. and then when all the trials have gone well if you go into clinical trials that is into research with actual patients initially healthy volunteers will be thinking. of around ten thousand active substances evaluated in pre-clinical research only about five actually get as far as clinical trials active ingredients are tested in three faces off and on many thousands of patients and the drug will only be approved if the clinical trial goes off without

a hitch despite the whole thing takes about ten to thirteen years and cost several hundred million dollars you're one of the pharmaceutical companies prefer to invest in projects with high profit expectations rare diseases are not included they're often complex and unprofitable christian among us cease the challenge and it isn't a say congo you know that right is eason's can only be treated in an interdisciplinary and cross sectoral way. that means networking is crucial on this the digital revolution of course suppose. it's us and this. digital techniques are incredibly good tools. he says middle. but where the market shows no interest the state and now society can step in with donations if necessary. it worked with the ice bucket challenge at least one hundred forty million dollars in donations were collected worldwide and a year later the researchers could actually report

a success. they were able to replace the damaged protein ls with a synthetic one in the laboratory thus preventing the death of affected cells but still isn't someone who was on the we have to be aware that this probably won't happen again in that way and we also have to be aware that the people who made the donations didn't necessarily learn a lot about the disease but learned carved by only enthusiastic celebrities tipping ice cold water over their heads and the following it attracted. these i. wasn't a follow what. how big does the crowd have to be. how many followers as it takes to tackle the thousands of rare diseases why does someone need to stay sick when we have the tools to help. romania or teams found the global aid organization ridge or nomics in two thousand and twelve. that helps

patients with rare diseases to finance genome analysis. yes mean fun for a cleaner and her brother are two of them. d.n.a. analysis showed that the siblings had different gene defects that required completely different therapies. and it is very important when people try to see it as i mean reagan has over eighty percent of gray diseases are known to be genetic in origin. comprehensive health insurance is a luxury in the us some families have gone bankrupt trying to treat rare diseases. i work directly with families to actually talk to the insurance companies to act ask for insurance coverage and every time here early on they say oh it's experimental this experimental test so we can't cover it and we started helping any families that we would offer that as an option if they could not for the to. so we

they're also trying to do insurance coverage and that's where we say well we'll help you how often you're willing to do that. accompanies patients from the crowdfunding campaign through analysis of the results to possible therapies. i've seen just in the past i would say for years alone there has been a big increase in interest in where diseases and in pharma the more research that is done the more findings you know. associated with disease the more people will be interested in. networking and crowdfunding are useful tools for people suffering from rare diseases. but there's also a need for political oversight. and incentives have now been created at the e.u. level to encourage the pharmaceutical industry to tackle rare diseases and also to

see the appeal in developing drugs for them and that's and you can. these incentives for the pharmaceutical industry include simplified approval procedures and better patent protection at the same time the costs of d.n.a. analysis have fallen dramatically when the human genome project was launched in one thousand nine hundred it was the first time that all three billion base pairs of the human genome have been identified and mapped. the project took thirteen years and cost three billion dollars today you can have your genome sequenced in a single day for about one thousand dollars and the price continues to fall. the highs the drop in the cost of sequencing means that you can suddenly do anything you can think to do. and come to the fortune income. but what impact is having to first court the broad public via the internet have on research. what sort of

projects stand a chance. yes. we're flying to london where british researchers were the first to lay bare the impact of l.s.d. on the brain using modern scans. the proposal was an online crowd pleaser instead of the target of twenty five thousand pounds the crowdfunding campaign brought in more than twice as much. david knott is a psychiatrist at imperial college in london by scanning the brain out of the influence of l.s.d. he wanted to create the first precise imaging study of the drug's effects for medical purposes his priority is the treatment of depression. depression is the largest disability in the western world including germany because the clinton's not very good condition starts young continues all one's life

and so it's very expensive but we've made so little progress in the last twenty years that most pharmaceutical companies have given up and that means we it's now up to us as scientists and technicians to take up the challenge. not is focusing his research on psychoactive substances it's a difficult but he thinks promising field of research. classic antidepressants like prozac they increase in the brain and they protection from stress they dampen down the stress responses so eventually you know you can cope with the stress of life but the psychedelic play kind of reset the brain so that you can overcome the stress rather than protect yourself against. the w.h.o. classifies l.s.d. is highly dangerous which means no public funding for research into the substance is available. it is not a medicine there's only one class and that class is the most harmful and once

you're in that class it's very hard to work with. the money from the crowd funding camp david complete his imaging study subjects were given l.s.d. and put into the brain scanner with unexpected results. we found exactly the opposite of what we predicted we thought people having a trip on magic mushrooms or as the saying all sorts of wonderful lights images you know they're traveling through space and going to magic mountains and things we thought their brain will be activated it's not switched off it's stuff because these drugs disconnect you from the outside world you're seeing the inner workings of your mind rather than the constraints is put on your mind. and that's why they work in depression because they switch off the circuit of depression to people write to me every day almost saying can i have the treatment i say no because we're not allowed to give you the treatment because it's illegal to. further studies are

needed but the british medical research council which is responsible for research funding is still skeptical money from the state for research into class a drugs it's unthinkable. there are two kinds of harms the drug can do there's a harm the drug can do to the people who use it and the harm that drugs can do to society as a result of people using it. and when you look at societal harms way way above everything else at the top there and then heroin crack psychedelics have no societal harm they may even have benefits if the current. research against the mainstream is exhausting because state support programs deliberately and quite rightly contain control mechanisms ethics committees constantly reassess the benefits of the general public and the dangers to the test subjects but david not

thinks crowdfunding is also important for another reason. it's part of a bigger profile of communicating science and also communicating the obstructions to science that's actually critical because we're in this stupid position of having banned drugs for fifty years because the traditional media refuse to think differently in social media. much more opportunities to communicate the truth to people so so i see crowdfunding as part of a larger public. communication strategy where we get people to understand that their families are being disadvantaged because the law doesn't allow the use of it but. if the state of the pharmaceutical industry don't support it then the crowd really step in and even impact health policy will medical research become like grassroots democracy in the future. where it seems to be more easy to mobilize

people for the. research was a bit different in my case. we're visiting christopher rom and stockholm he's also been trying to obtain funding for his research topic first from conventional bodies then through crowd funding he's a psychiatrist at that carolyn institute and wants to study the treatment of pedophilia. tried the traditional way. many many times but i was declined all the time there are people reading this application maybe some of them have personal opinions on the topic there is not in my backyard syndrome around this. there are issues nobody wants to know about although there's a real need for action. the overarching aim of the study is to find ways of reducing the number of child sexual abuse is by establishing an evidence based scientifically proved. method to treat adult men with pedophilia disorder

some studies indicate. adult population one to three percent have sexual fantasies and more than children almost one in ten girls. sexual abuse during childhood and one in twenty boys and in almost fifty percent of the cases this done by someone with a pedophile it is a wonder. around wants to find out whether a prostate cancer drug can also preventative lee help pedophiles by inhibiting the body's own to start their own production. looked on the brain functions behind these risk factors hypersexuality buffy and disturb self-regulation and i saw that all these brain functions had in common that they were partly regulated by testosterone in a way that if you remove the first or strong then it would have a beneficial effect on the risk factors after being refused government funding in

sweden christopher started a crowd funding campaign on the english web page crowd science in two thousand and sixteen with everything a campaign like this needs. but i had to find something to give in return in my case of. early results to get to know the results of the study early and to maybe come here and visit and. post called some t. shirts and think. the outcome was devastating crowd showed little interest and not even twenty five hundred pounds were raised. thirty eight thousand. but then when i counted the money when i looked on their count. almost nothing came in to sponsor this kind of project maybe people think that i have some kind of personal link to the problem. you know something that you have been the victim yourself or something like that and most people choose to not because of that i think.

ron is now turned his back on crowdfunding for the time being he's recognised that science is facing new challenges. as a researcher you must change your thinking you must you know convince the layman the. people are not involved in research at all. it's clear society should not leave decisions to the general public exclusively anymore than it should to the pharmaceutical industry. some startups are taking a different approach they don't involve the crowd as private donors for a good idea but as participants in an up and coming company.

our research leads us to a christian sits in berlin his company is developing a therapy for aids patients. but it's not really a self-starter because public perception of aids is that it's now less threatening . but that's wrong the virus is adaptability means it can quickly become resistant to existing drugs. mice and many committed most drugs in the current standard therapy target the building blocks of the virus itself. our substance attacks the building blocks of the human cell on which the virus inevitably depends. because if you shut down those building blocks the virus can't replicate the new cute conceals many people. more than two hundred donors have so far invested over three hundred thousand euro in christians it's a start up. and they're hoping to profit from the sale of the company's shares the

risk is high but this sort of crowd investment spreads it over a wide investor base. some einen on the one hand it's very difficult to attract larger investors during the early phase which is where we are still. but you do get the chance to let people know that while treatment for hiv is good the virus is still a problem in the uk and probably in the us today. but the crowd doesn't just provide funding for medical research many projects also call for the bundled knowledge from a community of researchers. really i am going to say. i mean just didn't. know any. more and. more. were in mumbai india mumbai's location

and population density make it a stronghold for transmittable diseases the monsoon in june also brings in mosquitoes sixty percent of the city consists of slums the much loved breeding. around for the mosquito genus and the felice. the females transmit parasites one second blood which causes malaria. the national chemistry laboratory and. this is work done and. is doing research into anti-malaria drugs. definitely is not. population in fact. even in settings like. for example in mumbai in india we do have. to see snow so

every year after the monsoon rains here you have. patients coming into hospital with malaria. with two hundred million new infections worldwide every year malaria is hardly a rare disease nevertheless the development of an effect if drug has been sluggish . diseases like you know i think once you become obese then. come. along and there is a lot of money to be made by. companies because they can sell your drugs for an extended period of time with infectious disease. especially for. you know just two weeks treatment. the scientists have to deal with the pathogens mutations despite extensive research the fight against the. different

pathogens from region to region genetic differences in people affected co-infections with other germs and increasing resistance have all conspired to slow the development of a reliable for. seen against malaria. the swiss foundation medicines for malaria venture supports scientists in india and other affected countries working with scientists from countries that actually have malaria is really important you always hear in the news that you know there are new mutants coming up when you're even new species arriving just to understand is really important. the m.v. foundation distributes important raw materials from malaria research in the form of a malaria kit to dozens of research teams around the world the only condition is that the results must be freely accessible to all similar to open source software

that anyone can work on. and everything must remain patent free so that future drugs do not become unnecessarily expensive. this millennium bugs has four hundred molecules some of them have the potential to become drugs. but a lot of science needs to get done and the fundamental level to understand how this money goes for what they're getting so in love is willing to give this money goes to immediate search or anywhere in the world free of cost as long as they promise to shab the data which comes out of their search so one of the things that a lot of the open source work has done is bring the whole community together with common standards and common delusion. in this case infrastructure is being created in affected countries that will allow research to go ahead independently of endowment funds. the scientists in who may now produce

the expensive molecules themselves which also excel or it's malaria research. a colleague from the singapore university of technology is here on a visit to. his research also benefits from the results from india because he can use them without any restrictions for one of the things we try to do we are looking at chemical libraries and right in the fake molecules that can block an emission of the part of it and then look at what in the part of it or in the cell that are affected by these small molecules that line of research using that sort of molecules are doing in my laboratory not only possible because of that open access library made available to a monkey. today the results are spreading faster than the pathogen itself. shanmugam is confident.

we have discovered these two sets of molecules within the malaria box and once we understand how they work what is their target and then we will test whether better states have the ability to become resistant to these. it's now completely normal for the research team to exchange results with colleagues all over the world. it's a huge cultural change. one of the deep questions is how you train the next generation of leaders in drug discovery for neglected diseases from the countries and so so there are very very few groups in the world so you know africa in south america. in southeast asia or in india who where you have a leading international. scientists working on drug discovery so anything we can do in these projects are very good for that. the fact that the

results of networked research are open to all accelerates the increase in knowledge enormously by. sometimes patents block independent development. i linda grant works for the american parcel miss foundation its mission is to bring research neglected by industry to market maturity male contraceptives for example our founder language. was very impressed with the work on rice which is a product that. is a device using a. and actually emptying the rights to the outside. the patent costs ninety thousand euros. vessel shell is a non-hormonal polymer gel that specifically blocks the vast difference and prevents sperm transportation for about ten years. the principle is comparable to

sterilization but can be easily reversed because a second injection can just rinse the gel out again. it's been tested successfully on humans in india for years however the w.h.o. raised concerns and prevented western countries from participating in the study the foundation is now aiming to change that. that'll. get it to market to its core hole. is not. the devil which oh estimates that there are eighteen million and want to pregnancies every year but the development of contraceptive methods for men has stalled and not only because of male concerns about the side effects of hormone

treatments but hospitals and. this insecurity and they are now i believe by about. pharmacy to. existing one. now products they feel that if they develop that compete with the samples that they are doing are. the parts of his foundation is now looking for donors to bring the contraceptive to the market well we're seeking is who are socially minded individual investors who may want you know some kind of return. how will they are more interested in the social good. we also would. like to come in and finish something so we need you want to use that first visit project in regards to maybe get in. on. the study in india will continue in parallel however the product has hardly any chance of

entering the western market from there getting approval for a new drugs in europe and north america is a very complicated procedure. intentionally so to protect their respective markets . networking is also an advantage in commercial medical research and has made a new type of pharmaceutical company possible one that isn't large and slow but as many small active cells around the globe currently there are a lot of startups like this so we went to look at one. group to think about it. because you're right jonathan montague is the managing director of hotspot there are a few ticks a boston based company the chemist himself lives in berlin and directs employees all over the world from here. my hopes for

design to be so we say that hotspot the sun never sets experiment and that means our experiments are going on around the clock. the basis of our research approach is an understanding of how nature regulates certain proteins. that ones we can and now we can design new drugs that mimic these processes. or and can and which means we can manufacture new drugs for cancer auto immune diseases and other illnesses hashed out on. a computer program displays the protein atoms three dimensionally allowing the researchers to move around inside them in search of suitable substances. and so forth should their competition or chemistry. when our computational chemistry researchers use

screening methods to examine millions of substances in a virtual library to find a match for the target protein from stupidity and. it's like an extremely challenging puzzle where many researchers around the world are searching for the right piece. and skiffs. there are disadvantages of course there are scientists have to be very organized to work with so many different companies scattered around the world. and to my speed. mind for example you have to get up pretty early to do a teleconference with china. and they also have to get used to not carrying out the experiments themselves if you want. personnel in china costs only a quarter of what it would in germany or the u.s.

. so can you do four times as much with the same money that would be a turbo charger for research. jonathan montague has already gone through results with chinese researchers when colleagues in the u.s. are just pouring their first coffee. but what can such a small team achieve. yeah definitely like the advantage of a small team is that interpersonal communication is easier and we can have everyone in the same room and the russian sim. globally scattered and yet still all in one room this flexibility is a boon to medical researchers around the globe. the various approaches are diverse and from a sick network laboratories free research and the crowd funding for finance but they're still not universal panacea. it can be very fashionable when you talk about

the old computer stuff so sequencing the drug discovery stuff is a whole lot more. but they are helping to create new spaces for research outside the precisely demarcated territories of pharmaceutical giants. it clearly sets off . a progress and of scientific activities not only in one laboratory but many liberties level. and the masses are crowds wise enough to rally around the right ideas to finance them. i think it's both pros and cons some projects. are this color for irrelevant for instance in the tradition process to get funding can be done thanks to all the anonymous and the most but on the other hand some projects. discarded

for good reason by the traditional research funding but is also risks being done. it's not just the content that's changing the researchers themselves also. have to adapt an intensive exchange with the public is something very new in the laboratory . one really important us big. scientists we need to do. and we need to improve is to be able to explain the public exactly what we are doing but also that the actually doing of crowd funding. communicate science to people even if they don't fund it because it's out there your advertising your science and the people can choose to i guess maybe less than one in fifty choose to fund but the other forty nine year of. medical researchers fighting for media attention hoping to be seen by online crowd funds.

and the pharmaceutical industry is watching and waiting. for projects that could still make a profit. may have inspired people companies to get back into this because now they see there is a treatment. propaganda

on rails russians army is celebrating its victories in syria with an exhibition. training. bitter pill to swallow for relatives of those who died in combat many receive little assistance and feel abandoned d.w. reporter a newspaper she tell needs families of fallen soldiers and here's their stories. in thirty minutes on d w. more than just earning

a living work promotes integration. workers are active independent and take part in society. but how do foreigners or people with disabilities join the workforce. we ask to. learn about their difficulties opportunities and successes made in germany ninety minutes on d w. no cause for celebration world press freedom day on t.w. . shifting powers the old order is history the world is reorganizing

itself and the media's role is keep the topic in focus at the global media forum twenty nineteen today one out of two people is online who are we following do we trust to beijing and shape the future at the georgia dome a global media for twenty nineteen. venezuela's military has voted to stand firmly behind president nicolas maduro that softer the country's self declared president why do called for a series of strikes hoping to force majeure to each of cairo joe has described this week's protests as the final phase in a sting madrid oh even though they have failed to break the political stalemate. tens of thousands of people have taken part in another mass rally in saddam's capital khartoum they are pressing the military.