Ben’s Friends Introduces Ben’s Connections

You may not realize it, but your experiences, personal preferences and opinions are hot commodities in today’s data-driven world. For social media giants and glitzy support sites, the bottom line in today’s connected world is “Wring as much information out of the participants as possible, and sell that information to the highest bidder.” And yes, that’s how they get rich: they sell your data.

Ben’s Friends’ social and emotional support sites for people whose lives have been touched by a rare disease or condition, works differently. At Ben’s, every member remains as anonymous as possible,  and controls their own anonymity. Committed to being a non-profit, the only personal information that Ben’s Friends has about our members is their email address, and that is visible to only a few top administrators.You have our word: your email is never sold or shared outside of our organization. That’s what makes us different from every other support site that we know of on the world wide web. And that’s also why we’re not rich: we run on a shoestring. (And we know it shows.)

We know our members. Besides social and emotional support from their fellow members, people at Ben’s Friends often ask doctor recommendations, they wonder about clinical trials, and whether participation in a scientific study would work for them. Loud and clear we’ve heard all of that, and we want to help our members with that part of coping with a rare disease as well.

BUT … but what? We want to help, BUT we still believe that our members need to remain anonymous, because anonymity gives people the safety of being able to truly speak their thoughts. And we also believe that our members deserve to maintain control over their own data. All of it. So after a lot of thought and brainstorming, we’ve come up with something we think will fill the bill: Ben’s Connections.

Like you, we know the power of friendships, and now it’s time to help our members use the power of connections too. So here’s what Ben’s Connections will enable our members to do:

• Find the best disease specialists in their part of the world and beyond,

• Find out about clinical trials which may be of interest to them,

• Participate in medical and pharmaceutical studies of their choosing,

• Share personal information with researchers that they select.

And all while allowing our members to keep control of their personal information and data. Access to Ben’s Connections will be through your Ben’s Friends membership only: only Ben’s Friends members will be able to use this facility.

Ben’s Friends and Ben’s Connections: a combination that will help our members cope even better with their rare disease or condition, while keeping their privacy and their data in their own control.