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RareShare was co-founded by David Isserman and Eric Steel in early 2008 on the idea that there is a better way to bring together patients, families and healthcare professionals to share knowledge and personal experiences about rare medical disorders.
While rare disorders may seem to impact only a small portion of the population, together they affect over 30 million individuals in the United States and Europe alone.
Due to the comparably low level of occurrences of individual rare disorders, there is often a lack of information and support for patients and their families. Our communities are designed for people to share experiences, explore treatment options and find support among others affected by the same disorders.
David Isserman is an experienced entrepreneur with a passion for building companies. Over the years, David has amassed a broad range of knowledge working in the technology, consumer products, retail, biotech, and public relations industries. Prior to founding RareShare, David founded Isserman Consulting, a successful communications and strategy consultancy that advised early-stage companies. Before that, he was a co-founder of The Selling Block, a company specializing in asset liquidation for businesses, which he sold in 2006. David holds a Bachelor’s in Business from the Indiana University Kelley School of Business and is currently an MBA candidate at Columbia Business School in New York.
Eric Steele’s background centers around the financing and operations of high growth technology firms. Prior to RareShare, Eric founded ForePoint Networks, a wireless internet service provider delivering high-speed connectivity throughout rural Indiana. Eric has extensive experience working with angel and venture investors and has assisted in closing multiple rounds of financing in both management and consulting roles. Eric is actively involved in the community and sits on numerous boards ranging from entrepreneurship to community outreach.
- 30 Million People – http://rarediseases.info.nih.gov/AboutUs.aspx
- SCLS – http://www.rareshare.org/communities/systemic-capillary-leak-syndrome
- AMN – http://www.rareshare.org/communities/adrenomyeloneuropathy
- Nutra Pharma – http://www.NutraPharma.com
Read the transcript
Dr. Mohammad Al-Ubaydli: Welcome to the Patients Know Best pod cast. My name is Mohammad and today I have with me David Isserman from RareShare. I read about RareShare a few weeks ago on TechCrunch because they noted how far the company had come since its launch and I was really interested about the focus of the founders and in particular the background of David himself, so David thank you very much for joining me here today.
David Isserman: Thank you for having me on.
Dr. Mohammad Al-Ubaydli: And would you like to just give us a little background, tell us who you are and how you got started with RareShare?
David Isserman: Sure. So first of all I appreciate you having me on the pod cast today. It’s nice to be able to talk about RareShare and let people know what’s going on and also answer any questions that maybe outstanding about what we are doing and what we plan to do in the future. So with that being said just to give you a brief background about myself, my name is David Isserman. I am a graduate student at Columbia Business School in New York. I am studying for my MBA and my background is then consulting and entrepreneurship. I, well before joining Columbia Business School in August I was a full time consultant. I worked in strategy for Bio-Tech companies and also for consumer products companies mostly early stage, start up worked out of Boulder Colorado and I basically spent most of my times helping these companies develop products, launch them, communicate with shareholders, investors and do a lot of public relations and so on and so forth and so one of my clients was a company called Nutra Pharma Corporation and they are a small publicly traded company that’s developing a treatment to several different diseases including
multiple sclerosis and a rare disease called adrenomyeloneuropathy which is abbreviated AMN, and while I was working for Nutra Pharma basically I, one of the projects we were working on was a patient educational website and it was, it was designed to help educate the public about AMN and about what Nutra Pharma is doing and what is, what is currently out here for treatments which there are none, so its fairly a short page on that but really talk about diagnosis and anything and everything that you could deal with adrenomyeloneuropathy and once that site, went live, one of the things that we had on there was an e-mail address that people could e-mail in just suggestions on basically improving the site and so on and what ended up happening was I was the recipient of those e-mails and upon launching started receiving e-mails every week from people all over the world asking me if there were other people I knew with this disease and if there is any way to connect with them or to find out more information about what they are doing, that’s working, what’s not working and how they could really just better their lives while living with this disease. So with that I decided to, I started looking into whether or not we should just add a message board to the AMN website and I decided that it probably wasn’t, going to be as useful as creating a new site on my own outside of Nutra Pharma that basically was scalable to every rare disease that was out there, and so that sort of was the inspiration for creating RareShare and that’s, that’s how, that’s how it started.
Dr. Mohammad Al-Ubaydli: Now you have the idea while
Working in the company but you started RareShare completely independently and this is by you and Eric Steele is that correct?
David Isserman: That’s right yeah so Eric Steele is a good friend from under grad and he was interested in working on this as well, and so what we decided was we launched it completely independently from Nutra Pharma although Nutra Pharma provided their blessings to start this and they understood the importance of what we were working on and they offered to help in anyway they could and we really appreciated that and yeah it was started independently, its basically privately funded by us and its continuing to grow and yeah so that’s really, that’s really how it started.
Dr. Mohammad Al-Ubaydli: Now what I find interesting is that even though you were dealing with one rare disease, you were actually getting lots of messages from all over the world because if you look at the whole globe and even though the disease is rare in every population, it still adds up to a lot of people and then you have a statistic on your website that if you add up all of the rare diseases from the USA and Europe we are looking 30 million people?
David Isserman: Yes, so that is there are two things going on there. One is just to talk about the statistics first. The answer is “Yes”. The NIH has a statistics that says there are 30 million people and there are about 1500 of these rare diseases, not including sub types and sub sets of these diseases but that is an astounding number. If you just sit there and think about it between the US and Europe you know it could be one out of every 20 people that you meet has a rare disease and which seems
like a lot of people if you think about it for being a rare disease but what happens is individually these diseases can be broken down into, into their different groups and they individually, they are very small numbers. So it is an amazing thing but one of the reasons that RareShare is working is because we are basically creating this portal for people to say “All right we want to be able to connect with other people, where do we go, what’s out there?” Well why don’t we start at RareShare, and so what’s happening is we are creating this network effect where people are going to RareShare and they are joining their disorder community and it’s, they are posting online on the discussion forms or contributing information, tips for living with these disorders, things they can do and a perfect example that is a community called a disease called “Systemic Capillary Leak Syndrome” and there is a community on RareShare that currently has 15 members. There are about 100 cases worldwide of this disease and out of the 15, we have one of the members is a physician from Mayo clinic who is the leading expert on this disease and the thing about the — what’s happening there is this ultra rare, ultra orphan disease we are actually, we are actually tracking a big portion of those patients who come in, join RareShare and communicate with each other and help each other, support each other, while they have this and they can learn from each other and learn from each other’s experiences and so the network effect for RareShare is very, very important as it is with any social network but we don’t have to have a million people to have our network work. We just have to have two and that’s, what so important about RareShare
And what’s so interesting about it at the same time.
Dr. Mohammad Al-Ubaydli: That’s powerful I mean I remember when I first say your site I hough it was, it’s a long tail of healthcare and that you have these hugely fragmented communities of the patients, but now they could aggregate and you are right it just takes two for this to be useful it doesn’t take a million. So you have already mentioned one example which is that clinicians can go online and there are world expert in very small population of patients and some other patients who do not necessarily have to be next to that patient, and that physician in the Mayo clinic it could be patients from all over the world and they could now access that expert and the expert can now access these patients for the next round of trials, what else do people do with your product, what kinds of things do they do on the RareShare network website?
David Isserman: So there are a lot of options that people have when they join RareShare and just to reiterate, this site is completely free. It’s open to everyone and, and anyone can join and everyone is welcome to join whether it’s a patient, a family member, a friend. A student researching a disease, or a medical professional, whether it’s a physician, or a nurse, or some one else in the field, a researcher that has an interest in the disease, anyone else, anyone and everyone is welcome. So with that being said what could happen when someone joins RareShare. Basically the first thing they have to do is they have to fill out a, they have to fill out an online form that basically is a sign up and I just, I just want to bring this up for one minute only because I want to reiterate also that users remain anonymous and the, there is an area where they…
Where you can enter your name and that’s optional, that’s going to be, you can ignore the “ballot me” section and that’s optional as well, and so basically the name and e-mail just are never shown publicly, never show in your profile it’s only your user name. So people can remain as anonymous as possible and we can appreciate the sensitivity of the, of the members and so that’s why we just want to reiterate that but with that being said what happens is when someone joins RareShare, basically they are able to go on and they can contribute information whether its everything from synonyms to tips with living with the disorder or it could be prognosis information, treatment information, diagnostic testing information any and all that information can be contributed by its membership. So its sort of a Wikipedia style set up although its different because when you go and you submit that information it does go into a moderation to which, which is looked at by hand just to make sure that there are no, there is no spamming on the site and once its approved, it does go through and the changes are noted. The other option that that people have when they join is they can go on and use these discussion forums and the discussion forums are specific to each community. So if you go to the adrenomyeloneuropathy community, that’s going to have a completely different discussion forum than the Systemic Capillary Leak syndrome. So what happens is you can go on and you can post and as, a traditional message board you can post and threads and new threads and reply to old threads and such and that’s really sort of the starting of the foundation of what RareShare has to offer its members. It is really a way to connect, what, there are couple of
additional things that healthcare professionals can do and it doesn’t necessarily have to be healthcare professionals, but if you say run a foundation for a certain disorder and you are a considered an expert on that, one of the things that you can do is you can opt to become the community expert for that particular disorder. So what happens is you basically apply to RareShare and you let them know little bit about your background and why you think that you are knowledgeable enough and capable of performing the duties as a community expert and then what happens is they are basically the person in that community that helps guide other members of that community to additional information whether its, you know they could, whether its certain Pub net articles that are published or whether its clinical trial information, you don’t provide medical advice that’s not really what that’s about, its really about guiding people to get as much knowledge as possible about their condition. So those are some of just, some of the things that you can do with RareShare currently.
Dr. Mohammad Al-Ubaydli: That’s interesting, that it’s a life line. So I guess one of the things you advice people when they begin to use the website is you are not there to give medical advice. Could you give some rare bit of advice that you give people as they beginning to play with the website?
David Isserman: Sure. So one of the things that we tell everybody which probably about half of the people listen to us when we say this but when you join RareShare the first thing you ought to do is you ought to go on to your community and post a discussion forum, whether its just to say hello or whether its, its to introduce yourself if you feel comfortable doing that or if its, if there is some of other questions posted and what we found is that, is that communities that post
Discussion forms attract a lot more attention. Those people that are sort of sitting in the sidelines come out and they, they interact and participate and that’s really where you can gather all of your knowledge is through these discussion forms, I mean certainly there are things that that are going to be added to the site such as tips or additional disorder resources, things like that or treatment options that are currently, currently going through the FDA process, but what’s going to happen is through these discussion forms, you are going to, you are going to get a lot of first hand knowledge and about living with your disorder and you are going to be able to answer these questions, excuse me your questions are answered and so one of the things that we just we strongly encourage people to do is once you join RareShare, post a discussion topic and let people know that you are out there and you want to participate and that’s, that’s really, really important and we do see that we see that with lot of these communities as soon as one person starts posting everybody starts participating and that’s, that’s sort of key.
Dr. Mohammad Al-Ubaydli: Well I stand guilty because, I actually, I read this today and I haven’t posted in discussion forums yet but I shall do so as soon as we I finish this phone call.
David Isserman: Good yeah, good right away.
Dr. Mohammad Al-Ubaydli: I think, but presumably from watching all these discussions, you have learned a ton. Tell us some of the things you saw, you learned from watching people on the site?
David Isserman: Sure. So one of the, I mean one of the things I keep talking about are these personal experiences and personal knowledge about living with these diseases and that may be discounted a little bit if you have a, if you have a disease that’s common, but when there is little research about your disease
its very hard to know what to expect and very hard to know how to cope or to deal with certain symptoms that occur because of this disease and so one of the things that I have seen a lot of on these discussion forms are discussion about coping and how to basically how to deal with these symptoms and what to expect in two years and six months and five years and 40 years. So its really matter of, sharing this personal knowledge and these experiences that people are having and you know you can take it for what its worth and that is you know free information but at the same time you can take it and you can look and you can say okay now I know more of what to expect in six months when you know with this progressive disorder you know I can know what to expect in five years or in ten years or how best to cope with this symptom or that symptom and what people are doing and what’s helping. The other interesting thing that I have seen a little bit of is people are actually you know sort of telling other people that there are certain things that you can do which can help reduce the symptoms of certain diseases whether its, you know nothing, nothing very medically oriented but things like you know walk for 30 minutes a day on a treadmill at a 8% incline helps, helps decrease this symptom, you know that so this you know there are things like that are being talked about online, so its really that issues…
Dr. Mohammad Al-Ubaydli: It’s interesting you know that, just knowing what would happened six months or two years I think we take it for granted today with common diseases because common diseases tend to have some treatments
But you know back in the 19 century few happened in medicine. One is, possibly for the first time doctors were saving more lives than they were killing but then the second thing is which was really powerful is that they began giving true prognosis to people. So they couldn’t treat your illness, they couldn’t cure your disease but they could tell you that this is going to happen over the next five years or your going to have to suffer with this for the next 20 years and that was very powerful we take it for granted today because we have so many treatments and cures but to someone with a rare diseases and orphan disease having that kind of time line especially from other sufferers is very valuable?
David Isserman: Right, right yeah I think that our members feel the same way with that kind of information.
Dr. Mohammad Al-Ubaydli: Let me ask you, yeah go ahead sorry.
David Isserman: I was just going to say one of the other things that that is little bit off topic but it also goes back to few of the points I made earlier and that is people don’t have to join RareShare in order to, in order to see the information that’s on the site and that sort of goes along with our social mission and that is to connect these individuals, but it is more helpful when you join because then you can participate but if you are just sort of interested in sort of being an observer, we do see a lot of people observing. We wish that they would come in and participate but at the same time we respect the that they are observing the discussions and so don’t be afraid to just come to this site and check it out and browse and see what’s out there and the other thing I want to bring up is something that a lot of people are saying and that is that their community is not listed on RareShare. We currently have about 745
Communities and I said before that there are about 1500 rare diseases. So we are sitting at, we are sitting at about half. What’s happened is we originally put up a, about 400 communities and we have since had requests to add additional communities to the site and what happens is when people go and they search for their community and its not listed its says suggests a community and we encourage people to suggest a community. Its usually up within, 24 hours or less and we just, we just there, we just want to make sure that we are adding communities that people want and so that helps us a lot. So if you go under RareShare you don’t see your community listed just suggest that we add it, we’ll add it and that will start the process of attracting additional members who have that disorder and make sure o join because when there is, when there is one member that really, that really creates a snow ball effect for other members and to join and participate and so this [Voice Crossover].
Dr. Mohammad Al-Ubaydli: I can tell you I did try to [Inaudible] the site and I did request and which need to be added but if you are to not join or they just watch what’s going on as part of that larger set of features you have to maintain people’s privacy and so you participate as much as you would like but you are allowed to participate with full anonymity and privacy if that’s what you would like to?
David Isserman: Exactly. Yeah I mean people have the option I mean this is a very sensitive subject that we are dealing with and so we want to take as much as many measures as possible to make people feel comfortable and safe on the site and that’s why we allow people to remain completely anonymous. We also — that’s also why we have this moderation cue because we don’t want; we really don’t want spammers coming on
And sort of ruining communities. So we take, we take away pride in basically allowing people to use the site as much as, or as little as they want and you know again these, make sure to suggest these communities that if you are an observer and you don’t see your community suggest anyway and will get it up there so.
Dr. Mohammad Al-Ubaydli: And then you have already answered the question I was going to ask you which is what do people worry about that they shouldn’t do. I guess then, one is security and privacy and you already on that and then the other one is what happens if they just get spam but you have the moderation there as well?
David Isserman: Yeah.
Dr. Mohammad Al-Ubaydli: What should people worry about they don’t think of?
David Isserman: Well one of the things that I’ve mentioned before besides the, besides being able to be as anonymous as you want is that the site is not backed by a pharmaceutical company. So we do want to make sure that that’s out there and reiterate that point that, so people know that it is privately funded and its just privately funded by the founders not by a third party, and its, its really being built for its members. It says it’s as a social enterprise its, which means that to us it means that we want to fulfill our social mission first and then create a business that’s financially self sustainable and so one of the things that points about brings into is we are going to be looking at ways to become self sustaining, so that we don’t rely on third party donations or anything like that and so we have full control of the site and so we are very, you know again we are very sensitive about the subject and so what we want to
what people know is that you know we are basically in very early stages of deciding how to make that financially sustainable, or sustainable but again its, members first and business second and that’s, that’s really the point of this is more filling profit than it is for profit and so we want to just reiterate those couple of points and again the fact that it is not being backed by a pharmaceutical company that’s being backed by its founders.
Dr. Mohammad Al-Ubaydli: That’s right and is there anything you wish I had asked you?
David Isserman: Well maybe just one thing that I want to bring up and that is the site is the logo at the top of the page says RareShare and underneath it’s says beta and what that really means some people have written in to ask that means you guys are just trialing the site and only going to have it up for a few months and then shut it down, the answer is “No, absolutely not” What we are trying to do here is that we want to reiterate that people, that the people should expect that the site is going to be continued to be improved and developed and beta just sort of is the marker that that says that that is not a finished product. We are for working on several different, several different new features for the site you know such as bringing in articles from Pubnet or bringing clinical trial information, allowing users to create personal journals that could be public or remain private for a family only. We are also looking at ways to collaborate among specific disorder communities within RareShare creating an umbrella group that encompasses a lot of these different communities that are very similar in character and so there are
Lot of things that “in the pipeline” so to speak that are going to be integrated into RareShare in the coming months.
Dr. Mohammad Al-Ubaydli: That’s good o know. David, thank you very much for telling us about the site and I do recommend it greatly and I look forward to its future and thank you very much for your time today.
David Isserman: Thank you for having me on and I look forward to talking to you again in the future.
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