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Transcript: Feb. 10, Noon ET

Rare Diseases

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Arturo Porzecanski and David Isserman
American University Professor; Co-Founder of RareShare.org
Tuesday, February 10, 2009; 12:00 PM

American University professor Arturo Porzecanski and RareShare.org co-founder David Isserman discuss the importance of giving people with rare diseases the ability to connect with each other.

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Porzecanski, who suffers from systemic capillary leak syndrome, has been able to use RareShare.org, a social networking site for those with rare diseases, to connect with other SCLS patients around the world.

An International Connection: Interactive Map of Rare Disease Sufferers

They were online Tuesday, Feb. 10, at Noon ET to answer questions.

The transcript follows

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Arturo Porzecanski: I am a professor at American University with a life threatening rare disease first diagnosed three years ago. And my story is in today's newspaper. Welcome to the chat.

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David Isserman: Hello everyone. Thanks for joining us today to discuss the topic of rare disorders and, in particular, how people affected by these conditions are connecting online through RareShare. I would just like to let everyone know that I am not a physician, so unfortunately, I cannot answer specific medical questions, however, I would be more than happy to answer any questions about the dynamics of RareShare and our goals for 2009 and beyond.

Joining me on the discussion today is Arturo Porzecanski, a distinguished professor from American University. He is also a member of RareShare and community expert for the Systemic Capillary Leak Syndrome Community.

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Reston, Va.: Mr. Porzecanski, thanks for sharing your experiences with a rare disease and for alerting readers to RareShare. I too have a rare disease and it is always helpful to find another way to communicate with fellow patients.

I have a question about the nature of collaborative support groups for patients, but first some background... I'm currently a member of an e-mail list where patients with my disease discuss treatment, quality of life, and similar issues. Recently it has come to light that there are non-patients (specifically physicians and representatives from drug companies that treat our disease) who monitor our list. Many list members had concerns with this, from a privacy and information sharing perspective. I noticed that RareShare encourages participation by healthcare professionals as well as patients and families. I wonder if you have heard from other RareShare members any concerns about medical privacy that might impact their participation in the collaborative forum?

Arturo Porzecanski: In general, people who are ill usually don't want to talk about it, much less put their thoughts in writing to strangers through the Internet. Therefore we must all try to balance our legitimate concern for privacy, with the need to reach out to others who are going through the same thing. The good thing about RareShare is that you pick a username and communicate with others without necessarily revealing your true name or email address, therefore, I found it ideal for my purpose and, frankly, I don't care if some representatives of the pharmaceutical industry find out about my illness-- as long as they don't have direct access to any one of us.

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New York, N.Y.: Two questions for Mr. Isserman: Which disease has the largest number of users on RareShare? How do you plan to expand RareShare?

David Isserman: Thanks for the great questions. The largest community on RareShare is currently the Adrenomyeloneuropathy (AMN) community. It has 43 members.

In terms of expanding RareShare, there are several initiatives we are actively pursuing.

We are planning to implement several additional features in 2009 that will add tremendous value for our members. These include information about clinical trials, recent journal publications, additional tools for increasing communication between members, such as a private messaging system, and personal journals.

Outside of the site, we are establishing partnerships with patient and disorder advocacy groups. Most recently, we started working with a university medical program in England to help us develop disorder-specific content for the site. Details about that will be coming out shortly.

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Washington, D.C.: What is the revenue model for RareShare.org? Do you take money from pharma? No judgments, just asking - transparency is important to me.

David Isserman: Great question. RareShare falls under the category of "social enterprise". For those that are not familiar with social enterprises, they are for-profit companies that focus on fulfilling a social mission.

We decided to go this route, instead of becoming a non-profit, primarily because we would like RareShare to become financially sustainable so that it will not rely on donations or public support to operate and grow.

To help us make RareShare sustainable, we will be exploring options that include, but are not limited to, specific advertising models. These may at some point be from companies in the life science industry. With this being said, our priority is to maintain the privacy of our members. We will never compromise our members' privacy in order to make RareShare financially sustainable.

Additionally, I would like to note that, at this point, any revenue that is generated through RareShare will go back into expanding the site to make it even better for our members.

I hope this helps answer your question.

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Los Angeles, Calif.: I presume there are psychological benefits to people connecting with others who face the same rare conditions they face. I wonder if this psychological benefit also yields physical benefits, and if there are physical benefits to having a good psychological state in facing illness.

Arturo Porzecanski: All my doctors have told me at having a good attitude and good mental health in general are crucial not just to survival but also to living with an illness.

David Isserman: I would agree with Arturo. Although I haven't read any recent studies on this subject, it would make sense that there would be some type of positive correlation.

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Crohn's Disease: At one point the diagnoses of Crohn's was rare. Presently, there are people being diagnosed with Crohn's all the time. Is it a matter of the current technology that allows for more proper diagnosis or are people suffering more now? At what point and what factors can a disease go from rare (I think of the actress Duff) to common?

Arturo Porzecanski: All my doctors tell me that rare diseases are usually mis-diagnosed, and therefore, I have spent a lot of effort to educate doctors about my particular illness, because I worry about those who have died, and might die in the future, because of the ignorance of their doctors. In sum, I think that it is not that people are coming down with more diseases, but that they are being more properly diagnosed now, that information flows more freely through the Internet.

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St. Louis, Mo.: What if a member would like to become part of a clinical trial. Is RareShare a good source to connect?

David Isserman: Hello St. Louis (My hometown): Thanks for the question. We are currently exploring options that will allow members to opt-in to receiving information from RareShare about upcoming disorder-specific clinical trials. We are at the very early stages of this discussion.

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Washington, D.C.: I read the article with much interest this morning. During the time you were putting together your own organization, did you ever consider contacting the National Organization for Rare Disorders (NORD)? I note that NORD and EURORDIS (the European NORD) were merely listed at the end of the article, but NORD celebrated its 25th anniversary last year, and was key in getting the Orphan Drug Act written and passed. This is not to take away anything from your organization, but collaboration on rare diseases and disorders is essential.

Disclaimer: I am an attorney who has represented NORD for more than 20 years. Just a bit partisan, I guess, but I am indeed in favor of collaboration.

Arturo Porzecanski: Actually, the very first thing I did, was to make sure that my illness was listed and explained in the NORD web site. You see, my illness is so rare that it had not even made it to the attention of NORD. However, the NORD web site does not allow for interaction among patients and health care providers, which RareShare does. So, I support NORD and use its resources, but also use RareShare.

David Isserman: NORD is a wonderful organization and we would welcome the opportunity to collaborate with them. I believe a collaboration would create great value for our members. Feel free to reach out to me privately if you would like to discuss further.

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New York, N.Y.: How many people do you feel need to connect for these individual disease groups to start adding value to the search for information and shared experiences?

Arturo Porzecanski: In my case I was down to knowing only one other person alive with my illness, so every additional person I communicated to through RareShare, greatly expanded my relevant universe and comfort zone.

David Isserman: All it takes is 2 members to create a community.

My biggest suggestion for those joining us today is to take a minute and join a community. All it takes is 2 people to start a great conversation.

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Bronx, N.Y.: My daughter in law has iritis, an inflammation of the iris from lupus. Does anyone else have this aspect and would like to correspond?

Arturo Porzecanski: I recommend you join or create a community in RareShare, to facilitate your coming in contact with others who are familiar with this illness.

David Isserman: I would suggest joining the Iritis community on RareShare: http://www.rareshare.org/communities/iritis

Once you are a member, feel free to post this exact question to the discussion topic. This will be a great first step for you in finding the information you are looking for.

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Washington, D.C.: Shout out to AU! Proud graduate here of SIS! My question to Dr. Porzecanski is if he has read or watched the inspirational lectures of Randy Pausch who died last year after suffering from pancreatic cancer? The lectures are truly inspiring. Additionally, I was wondering how hopeful Dr. Porzecanski is for better treatment or a cure for the disease. The amount of rare diseases percolating in the world is amazing and funding is limited. I hope a breakthrough can be found in time but I was wondering how you feel knowing that more funding for your illness will inevitably take away funding from someone else's own rare illness.

Arturo Porzecanski: Yes, I did watch Randy Pausch's videos, of his struggle with terminal pancreatic cancer. In my case, I am lucky that the illness is life threatening but not terminal, so it is like having to play Russian Roulette rather than like being on Death Row. With regard to research on my disease, my achievement so far is to move it from the hospital emergency room to the medical laboratory, in this case at the National Institutes of Health. I don't know if a cure will be found in my life time, but at least I made sure to pass the torch to where it belongs.

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Mill Valley, Ca.: For people with rare diseases, finding a good doctor can be tough. Does either of you have advice as to how to do this? Can RareShare help with this?

David Isserman: One of our current initiatives is to create a directory of physicians that specialize in rare conditions. We would not only welcome participation from these doctors, but we would also provide RareShare members with specific physician information within their RareShare communities.

Arturo Porzecanski: In my experience, yes, the toughest part is to find a doctor who is not only competent and compassionate, but is also interested in a rare disease. Doctors don't make any money covering a patient with a rare disease, because they spend so much time which the insurance companies don't compensate for. My advice is to look for a specialist in internal medicine at a major university hospital, because chances are that even if he or she is not interested, they will find a colleague who is.

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Seattle, Wash.: Arturo - What advice do you have for patients with a rare disease, who want to see more being done in terms of research?

Arturo Porzecanski: First, you must become an expert yourself, which you can do by looking through the Internet and using the virtual library of the National Institutes of Health, at www.pubmed.gov. Second, you should contact NORD and become a member of RareShare, because there I strength in numbers. Third, ask your doctors to put you in touch with whatever experts there are in the world on your illness. Fourth, look through the Internet for stories that have been published in the newspapers that provide inspiration and give you tips on how to proceed.

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Crohn's Disease: As one who has Crohn's I decided to check out the site. There has not been that much activity within that community as of late. Other than today's article and chat, what is being done to get the word out there of this site and to increase members/activity? Thanks.

David Isserman: Thanks for visiting RareShare. Over the past few months, we have been reaching out to various organizations to help educate them about our website and to explore opportunities to collaborate. RareShare is still a young website. We believe that our communities will become even more active, as we continue to grow.

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David Isserman: I just wanted to throw out a couple suggestions for those that have an interest in participating in RareShare:

If you see your community online and it has no members (and there are still some that fall into this category), still join it. We have found that once a community has its first member, other visitors will join RareShare and start participating in that community.

If you don't see your community online, go ahead and join RareShare and "suggest a new community" for us to add. There are thousands of rare disorders, so we are constantly adding new communities.

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Mechanicsville, Md.: I have been seeing a Hematologist going on three years now. I am on iron infusions which I get Venofer for five sessions and then I go off and within two months, I am back for more infusions. My body does not retain the iron that I am getting. I have been down far as five in my iron saturation and never have been any higher than 68. I had a bone marrow test and that showed nothing out of the ordinary. My blood cells show some abnormality in shape size. I am thinking I need to get another physician to give me a second opinion. My hematologist states that he only has three (three) patients like me that he cannot stabilize the iron saturation levels. He is also a Oncologist in his field of work. Can you provide me some guidance of how I should proceed?

Arturo Porzecanski: You should always get a second opinion, and in the case of a rare disease, probably a third opinion as well. One way to go about it is to look up your illness on the Internet, and specifically through the NIH virtual library, www.pubmed.gov, to get the names of the scientists who have published on your illness recently. This will give you the names and institutions of people who are doing cutting edge research and to whom you should go to for a second or third opinion.

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Arturo Porzecanski: Thank you for participating in this live chat, and my advice to you is to stop complaining about the cards you were dealt and to start doing something about the cards that you have. This is what Patient Power is all about.

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David Isserman: Thanks to everyone for joining Arturo and me online today to discuss the topic of rare disorders.

I would like to say a special thank you to Eric Steele, who is also a co-founder of RareShare. Without Eric's help, RareShare would not be where it is today.

We love receiving feedback and suggestions from people interest in RareShare. Please direct any feedback to info@rareshare.org.

Also, if you are interested in exploring ways you or your organization can become more involved in RareShare, please feel free to email us as well.

We look forward to having you join us online at http://www.RareShare.org

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Editor's Note: washingtonpost.com moderators retain editorial control over Discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions. washingtonpost.com is not responsible for any content posted by third parties.


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