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RareShare - David M. Isserman

Staff (Social Media Portal) - 17 April 2009

RareShare - Profiled


An interview with David M. Isserman, co-founder at RareShare

Social Media Portal (SMP): Tell us about RareShare

David M. Isserman (DMI): RareShare was founded 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.RareShare logo

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.

SMP: What made you start RareShare?

DMI: I was originally inspired to create RareShare through my work in the biotech industry, specifically with a rare disease called Adrenomyeloneuropathy. Through this work, I realized that there was a lack of communication between those affected by rare medical disorders. My goal with RareShare is to create an environment where people feel comfortable communicating and sharing experiences with others affected by the same disorder.

SMP: What was the most challenging part of building the service?

DMI: Members have been great about suggesting new features for the Site. But because they are all great ideas, it has been challenging to decide which ones to add next.

SMP: Who are your target audience and why?

DMI: Our members are primarily people affected by rare disorders. These include patients, family members and healthcare professionals.

SMP: How did you initially attract users to your site /service, and how do you do it now?


DMI: Word-of-mouth has been extremely helpful in building awareness about RareShare. Many of our current members refer new members.

SMP: What are your best and low moments of what you have been doing so far?

DMI: Since entering beta in late-June, we have received a lot of positive feedback. It is exciting to see that people are using the site.

SMP: What are the next moves for RareShare?

DMI: As the Site continues to grow, we will be adding new features that members have requested. The list, which is now several pages long, includes a more advanced member profile page, private messaging, and the ability for members to create personal journals (blogs). 


Now some questions for fun

SMP: What did you have for breakfast / lunch?

DMI: Typically, one can find me at Starbucks in the morning picking up an iced, grande, non-fat, chai.

SMP: What’s the last good thing that you did for someone?

DMI: I love to volunteer my time for wilderness conservation and the sciences. I currently serve on the boards of the Academy of Science of St. Louis and the St. Louis BioBlitz.

SMP: How many hours to you work a week?

DMI: At least 15 hours a day and sometimes Saturdays. That would place my total weekly work hours between 75 and 90.

SMP: If you weren’t running RareShare what would you be doing?

DMI: I would probably be hiking on a remote mountain trail, kayaking the Sea of Cortez or skiing in the Rocky Mountains.

SMP: When and where did you go on your last holiday?

DMI: In April, I spent 3-weeks travelling around New Zealand. I came home in May for 5 days and then went to Paris for 10 days.

SMP: What’s the first thing you do when you get into the office of a morning?

DMI: I usually check Google News to see what’s happening around the world.

Read more about RareShare here.


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