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A visit to Iran for Rare Disease Day 2017

As a member of the EURORDIS delegation, I was invited to participate in the Rare Disease Foundation of Iran’s 8th International Congress on the occasion of Rare Disease Day.

The Congress was held at the IRIB International Conference Centre in Tehran from 24th – 28th February 2017. 1 day was dedicated to specialists, and another 2 days to patients and families. The event was a huge success with more than 3000 participants and numerous presentations from patient organisations. Special moments for the audience came in the form of presentations from celebrities who were supporting the event, including Amir Ghalenoei, the football coach; Behzad Farahani, the actor and screenwriter; Mohamad Reza Golzar, the actor; and Nikbakht Vahedi, the football player.

When the Foundation presented their spot for Rare Disease Day, you can imagine my surprise when I saw my son, Matija in it! It also included celebrities and parts of a Croatian documentary on rare diseases, “Day by Day”, which was made by Rare Diseases Croatia in 2015. It was an amazing surprise!

My presentation,
“Looking for solutions” was on the programme for specialists, which was excellent. It would have been even better if patients and families could have participated as my intention was to promote collaboration, sharing, and networking in order to achieve better a quality of life for those living with rare diseases. I believed that sharing my personal story and experience of DEBRA Croatia could encourage patients to be more proactive.

For me, the most interesting meeting was in the office of the Foundation where I finally had the opportunity to speak with those who are regularly in contact with and who take care of EB patients. According to their information, they now have
1200 EB patients with the majority living in the south of Iran. There are now 3 centres for EB with specialists in dilatation and hand surgery. Although, the appropriate medicines and dressings are used, the problem comes in the form of getting the necessary quantities due to costs.

We had a meeting at the
Ministry of Social Welfare where patient rights, and the high prices of dressings were discussed. You can notice how the general poverty is a problem for families with rare diseases. Our translator commented that, in general, the culture and embargos make life much more complicated, and that in reality patients are not able to ask for anything. Education and persistent campaigning may be the way to bring about changes.

Our participation and visit to Teheran was incredibly interesting, and very much appreciated by the Foundation and patients!

Vlasta Zmazek, President of DEBRA Croatia and board member of EURORDIS