Jimmy and Avril recently traveled to the annual DEBRA International  Congress meeting, held this year in Rome. There, they had the pleasure of  meeting the lovely Dorothee Rahn (Doro). Doro is a journalist and shared this insightful article on her experiences of the meeting with us…..

Isn’t it amazing how much information you can pack in only three days? That was my immediate thought when I looked at the schedule of this year’s DEBRA Congress in Rome, Italy. And I haven’t been disappointed. What I experienced was three days full of interesting presentations, nice encounters with people and lots of different experiences in the area of EB.

What also impressed me quite a lot over those three days in Italy’s capital was, that you, literally, travelled the world without actually leaving the congress centre. People from 20 nations came to exchange experiences, to give presentations, or to listen to them.

And there was a lot to learn during those numerous of presentations I saw. Did you know, that there are many approaches in development to treat or even cure EB?

I met Giovanna, who was kind enough to tell me, that she knows about three different ways that might cure EB in the future. There is possibly a genetic way, called gene therapy,to get rid of all those annoying EB symptoms. Even though there are no clinical trials yet, there will be some trials in the United States and in France over the next few years.

Dorothee Rahn
Dorothee Rahn

Another way of trying to make this disease history is so called “cell- therapy” where your relatives can be cell donors, provided that they are healthy. Those healthy cells can then be used to treat an EB sufferer.

Another very promising possibility to treat EB might be the approach of the pharmaceutical company, Shire. They hope to use a special drug to replace damaged proteins in the skin of an EB sufferer.

The company, which is based in the U.S. managed to treat other rare diseases in the past. So, why shouldn’t EB be the next thing to make history in the future?

But as long as researchers and pharmaceutical companies don’t have an ultimate answer to get rid of EB symptoms, why not focusing on now? During the conference, I met Susanna. She’s a paediatrician at the EB Centre in Milan. Along with the blood bank, she produced a special liquid, made from parts of human blood, to treat chronic wounds and ulcers. Tests on patients have already shown that the concentrate supports the healing process and makes it faster, compared to wounds which are treated with ordinary dressings. So, as you can see, there is a lot going on in terms of EB research.

But the congress was not just about talking the disease and its effects. A very special “Meet and Greet” with Pope Francis for a handful of EB sufferers made this congress really special. They were invited to Vatican City and were treated like very important personalities. So, receiving the kind and encouraging words of the pope truly made it an unforgettable experience for many of the sufferers.

In conclusion, I would like to point out, that I found it really amazing what a strong bond DEBRA represents. It doesn’t matter what language you speak, where you come from or how much you’ve been affected by the various types of EB. From the first minute onwards you feel like a part of a very special family.