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12.03.2014

A focus on DEBRA Iran: No EB patient should be left alone

In the third part of our interview series, the highly committed Iranian doctor Amir Barzgar gives us valuable insights into DEBRA Iran. His mission to help people with EB in Iran is indeed bearing fruit.

"We should all be closer together" - what a wonderful sentence to close an interview and to start a very special article. This week, I was lucky enough to speak to Amir, who lives nearly 3.000 miles away from where I was doing the interview. Thanks to the internet and modern technology, it was possible to speak to him as if he was in the next room.

Amir is a paediatric dermatologist, working with about 350 registered EB patients in Iran. But getting to the point of being able to support EB patients and their families in that part of the world was not always easy: "We have a lot of bureaucracy." Getting a new charitable organisation officially registered requires a lot of paperwork and takes a lot of time getting it approved by the Iranian government.

But this is not the only problem, Amir has been up against. "Providing special sorts of dressings for EB patients represents another major problem." Importing medical supplies is another act of bureaucracy in Iran and it has a lot of regulations to it. That often means that not every EB patient can be provided with dressings and other vital medicine.

For Amir, it was time to step in. Two years ago, in 2012, he founded the first EB House in Iran. I had read an article about antigene mapping (= a diagnostics method) in a magazine and found it very interesting. Shortly afterwards, I got the chance to visit the "EB House", a centre of expertise in Austria and learned more about it. I got to see how this EB House works and what support patients and families get, and I was impressed by that. Up to the point in 2012, we hadn't cared enough about patients with genetic disorders, such as EB."

Since the EB House has been founded in Iran, it has about 350 registered patients and the number of new registrations rises weekly. For Amir this is a huge success already. But rising numbers of known cases of several types of EB also raises the desire to support them and their families as much as possible: "It would be fantastic if we could get our dressings from DEBRA International. That would save us a lot of bureaucracy and also a lot of time" says Amir.

His idea for DEBRA Iran's future is something very basic, but probably the most helpful thing in the world: "No EB patient and family should be left alone! We are all in the same boat; we should all work together as closely as we can, to make life with EB a little more manageable."

Dorothee Rahn, journalist for DEBRA International

Screenshot of DEBRA Iran's website

The brandnew website of DEBRA Iran