Global Genes reports that 350 million people worldwide suffer from a rare disease, with an estimated 30 million in the U.S. and an additional 30 million in Europe. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2,000 citizens and in the USA when it affects fewer than 200,000 people.

While each separate disease is rare, being a rare disease patient is not. In fact, 10% of the population in the U.S. is living with a rare disease. There are over 7,000 types of rare diseases, from the xtremely rare (only a few documented cases  worldwide) to the “common” rare diseases (about 350 conditions, covering 85% of rare disease patients).

Medical professionals focus on the physiology of the condition (as is their top priority), but little attention is paid to the trauma, anxiety, and worry that can accompany these conditions. Therefore, the need for emotional support is acute for these patients. Support from family and friends helps, but it is undamentally different from that of a fellow patient.

Since rare disease patients are geographically distributed throughout the world, it is difficult for them to make in-person connections with fellow patients and find the support they need in person. Thus connecting with fellow
patients online is their best alternative.

Ben’s Friends is a mission-driven 501(c)(3) nonprofit with an entrepreneurial approach. We operate with very low overhead allowing us to keep our focus on our members’ experiences. We have no physical offices to keep overhead to
a minimum, and we use a small, efficient staff to manage dozens of volunteers.

Since Ben’s Friends support  communities are web-based, we serve people literally all over the world. As long as they have a phone or computer, internet access, and, in some cases, translation software, anyone can receive support and advice from a Ben’s Friends community.

We are building a social network platform customized for the needs of rare disease patients by using open source software to give us the latest cutting edge technology. Our huband-spoke model enables us to rapidly  innovate. We can easily experiment a feature on one of our communities and then roll it out it out to dozens of other communities.

We do not track what most would consider truly demographic data. Since we deal with sensitive personal health issues, Ben’s Friends works hard to maintain the privacy and anonymity of our members. 

Ben’s Friends has five revenue streams: individual non-member donations, corporate and foundation grants, business sponsorships, clinical trial advertising, and  member donations. Our primary revenue sources to date have been
individual non-member donations and corporate and foundation grants.

While we will continue to pursue member donations, we do not anticipate it becoming a significant proportion of revenue. A “typical” member is a lower-income, married female over the age of 45. We have observed that we have a large number of members that are on disability or social security. Many of the conditions our members deal with affect their ability to support themselves.