International DOC Exchange Event, Stockholm 2015

Not just another brick in the wall

In her e-mail, Kerri asked: “What have you been working on over the last year?”

My answer is simple: the same that I’ve been doing over the past 15 years!

That is trying to inform PWD in a simple, clear language, so that it can be easily understood by everybody.

The website Portale Diabete was created in 2006 to satisfy my need of quality information on diabetes and treatment options, which arose when my younger brother began to suffer from serious complications and was waiting to receive a kidney-pancreas transplant.

In the true spirit of volunteerism, the website has no sponsors, receives no funding from any organization or pharmaceutical company, and contains no advertising in any form.

Then, I decided to adhere to the HONcode standard, as a guarantee of the reliability of the published medical information.

Portale Diabete aims to provide accurate and up-to-date information as regards the latest therapies for treating diabetes, but also wishes to promote a vision of hope for patients, as well as their families and friends.

As the internet is virtually reaching everybody, even those who are less acculturated and with little knowledge on diabetes, it is important to reach them by using a simple language and offering them the kind of contents they can understand, so that they may have an informed discussion with their doctors.

I think its clear and simple language is the reason why PD got over 4 million and a half clicks in 6 years.

But there is something else I’ve been doing during 2015: I’ve been trying to consolidate the DOC.

PD community was born at the end of 2003 and, since then, it has grown ceaselessly.

From virtual it has become real, with more and more frequent and important meetings.

Sometimes we just have fun

Christmas celabrations

Sometimes we meet for scientific conferences

Ospedale San Raffaele - Università Vita e Salute

Maggio 2015

Why have I decided to build a community?

Because I still remember the need to share my problems, my hopes, to talk to other people who could understand my feelings. I needed support and I found it in the American DOC many years ago. I felt like it was my turn to give it back.

How do you build a community? With infinite patience.

PD web community has boomed in the past year: in December we reached 5,000 contacts, and now we are almost 10,000! 

And of course it’s not just a matter of numbers. Numbers don’t mean anything without content.

I strongly believe that, in order to build a community, there must be a community manager acknowledged by everybody, someone who has gained their admiration, respect, trust and affection by being there for them every day, trying to motivate them.

I believe that a good community manager must be able to choose a valid group of clever, competent people to help manage the community: people who can step in and interact with them at any time. 

Francesca, who you meet today for the first time, is one of the best we have in our community. Very prepared, with a solid and professional background in communication (she’s a journalist, not an amateur, like me).

And why it is important? Because there can be moments in which negative energies need to be controlled, channeled and transformed in positive energies.

This is what happened for Plinio’s case.

Plinio is a baby boy who, because of a wrong and late diagnosis, will suffer from permanent consequences for the rest of his life.

After many trials, the doctors were proclaimed innocent.

The community was furious, people threatened demonstrations.

Nonetheless, sentences must be respected.

The DOC needed a way to express its anger, its disappointment, its closeness to Plinio’s family.

We were able to calm people down with a simple hashtag.

Most of the people changed their profile pictures with Plinio’s, while many added the hashtag on their Instagram and Facebook pictures.

This gave Plinio’s family the feeling that they weren’t alone, but were loved, and were part of a big community that was silently shouting “Plinio is our son” and “never again to anybody”.

Showing this union, the DOC felt the strength, the power of being cohesive.

In another occasion the DOC had the chance to show its unity, by posting over 700 pictures in just a few days with the hashtag #zuccherino (or sweety).

As our community is now stronger and stronger, we’re planning a meeting in Rome by the end of October.

The occasion will be the ceremony during which I will receive an award from the Italian Federation of Juvenile Diabetes for my work in communication.

I will be the first non-professional to receive this honor: in previous years the award went to television, newspaper and press agency journalists.

On occasion of last year’s World Diabetes Day my brother and I have been chosen, along with 7 other members of the Italian Diabetic Community, to be testimonials.

In the meantime, our community decided to create its own poster to celebrate WDD.

Last but not least, I have been called on to participate to the technical scientific committee of the Diabetes Web Observatory created by the IDBO to analyze and check the web contents regarding diabetes: among university professors, researchers, web communicators and statistics experts, I have been called on as an expert of the web sentiment and keywords of social networks.

As you can see, it has been a very busy year.

Thank you and ... see you next year!