If you happen to be living with type 1 and also working professionally in the diabetes field, there's a new online community just for you!
It is called We Are One Diabetes, a new "online collaborative center" for diabetes professionals who are living with type 1 diabetes, brought to you by Dr. Steven Edelman of the well-known California-based D-education non-profit Taking Control of Your Diabetes (TCOYD) and his colleague Dr. Jeremy Pettus.
"A lot of people living with diabetes, mostly type 1, are getting into diabetes professionally -- in all kinds of specialties, from media to medical, pharma reps and device companies, and more and more non-profits. But there's no one place for all of us to see who these people are, so the idea was to put us together into one spot," Edelman says.
Sure, there are scattered communities for patients to connect now -- such as TuDiabetes -- plus Facebook, Twitter and LinkedIn, not to mention the rich Diabetes Online Community (DOC) that has so many of us already talking about life with diabetes. But a place for those with both personal and professional T1D ties? Not so much, until now.
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The idea is to create a "collaborative registry" for connecting, networking, sharing and learning with D-peep professionals that will feature anything and everything from the latest happenings, research articles, reference and referrals, to diabetes life hacks.
At least that's the vision of co-creators, Edelman and Pettus, both diagnosed at age 15 and with a combined total of 60+ years of type 1 between the two of them. They are of course both highly respected diabetes patient advocates as well as being physicians who treat patients with this condition.
Edelman was diagnosed more than four decades ago and is a professor of medicine in the Division of Endocrinology, Diabetes & Metabolism at the University of California at San Diego (UCSD) and the Veterans Affairs (VA) Healthcare System of San Diego, and he's the director of the Diabetes Care Clinic, VA Medical Center. Pettus was diagnosed two decades ago, and is an assistant professor and endocrinologist at UCSD. Edelman is the founder and director of the popular educational conference series TCOYD, while Pettus is director of TCOYD's newest Type 1 Track, launched in 2012. Both are also known for their jovial personalities.
Both men say it can be tough to stay apprised of all the diabetes activity going on when you're busy in your particular job. Since many professionals aren't able to follow the broader social media scene throughout the week, it can be difficult to hear what other PWDs are talking about and what might be new.
So, We Are One Diabetes is meant to be a one-stop-shop for these folks to post about research or new medical discoveries, share significant social media links or promote meetings and D-meetups that might be coming soon.
"We've been thinking about this for a while," Pettus said. "Each one of us isn't able to (monitor the Diabetes Online Community) daily, so we thought maybe something like this could give us all an edge as new information comes out."
Here's a video promo the founders put together:
This is a TCOYD initiative, funded with that org's money and other ad or sponsorship revenue generated, including ads on the site itself. There's also a 14-person advisory board, made up of some respected advocates and people in the field who are living with type 1 themselves -- Kerri Sparling of SixUntilMe, Manny Hernandez of the Diabetes Hands Foundation, Kelly Close of diaTribe, Dr. Irl Hirsch of the University of Washington, Aaron Kowalski of JDRF, Claudia Graham of Dexcom, Kyrra Richards of MyaBetic, and Blair Ryan of Tandem to name just a handful.
The site's only been around for a couple of months, but there are already 200+ people worldwide who've signed up for free membership. You can search these professionals by name, location or specialty, and also send referrals to others who might be interested. So far, the majority of members are educators or advocates in the social media field, but there are also some endos and other doctors involved.
For now, the site is only accessible to members and it's specific to type 1. Why not type 2, you ask?
Edelman points to all the new organizations that have popped up in recent years for diabetes, and the fact that those with a very specific purpose seem to have the most impact. They wanted to stay hyper-focused on the type 1 population, at least for now to get the concept of a patient/professional community up and running.
So who's eligible to join, and is there some sort of screening process?
"There are no gestapo rules, it's really just having some professional role in type 1. Maybe there are people working down the hall from you who you didn't know also had type 1, and some of those connections can be made," Edelman says, adding: "We just want to bring people together, to connect, and this seems like it could take on a life of its own. Really, the opportunities are endless."
For this "first phase" post-launch, he says the goal is just getting people together and connecting through the site. A second phase will eventually expand the reach, and allow a richer multi-media experience with the ability to post pictures and videos.
Eventually, the pair hopes to add some in-person meetups as well. They're planning an initial get-together at the American Diabetes Association's Scientific Sessions 2015, happening this June in Boston. TCOYD is known for holding a joint evening forum at the annual ADA meeting with Close Concerns, so this new We Are One Diabetes meetup may be held the same night, either in conjunction with that event or at a nearby location.
Both founders believe in-person connections will help We Are One Diabetes grow, just as the DOC has grown and become enriched over the past several years as more bloggers and social media advocates have had the opportunity to come together offline. Pettus said this could also set the stage for increasing conversation about type 1 issues within the larger D-Community.
"Just getting this group together could lead to this being a really powerful voice, where some might reach out and wonder, 'What does the We Are One community have to say?'"
The two hope to hear feedback on what people want from the site, from how it looks to the content included.
Amy and I both signed up immediately upon learning about this, of course, and I found the site easy to navigate and a great way to identify fellow professionals with diabetes, whatever their particular focus.
To me, this is another great idea that makes me wonder, "Why didn't someone do this a while ago already?" I'm looking forward to connecting with more D-peeps in the professional world, and seeing how this moves forward. Can't wait for those IRL meetups, either!
If you or anyone you know with T1D is working professionally in the field, pssst -- please spread the word to join We Are One Diabetes.