EHC Now! Join us in welcoming our newest member – Haemophilia Association in Uzbekistan!

My name is Lilya and I am the president of the Haemophilia Association in Uzbekistan. I am in this role only for one and a half a year, I replaced the previous president. I will admit that this is a bit difficult role for me, because there are many things that I don’t know, I have not been in this field before, that is, I have never been in a leading role before. I hope that I am doing well! I am trying to do things slowly, as they say ‘step-by-step’. I hope all will be well! First of all, I want to thank the EHC for accepting us to this big family! Thank you very much! I hope that work with us will not create any difficulties. We are an organisation in development, and we need support. We have very good healthcare professionals, but we do not always have good opportunities or the experience to do the work that we would need to do. Through membership in the EHC, we would like to receive this experience, and we would like to reach those heights that many associations in the EHC membership have reached. The association was founded in 2001. Since that year we have had three presidents, I am the fourth one. We do not have many volunteers. For example, only recently we created a youth group. Therefore, our activities are not very developed. But we hope that with the support of the EHC we will move forward in that. In Uzbekistan we have 1887 haemophilia patients. In fact, bleeding disorder patients – we count haemophilia A and B, as well as other bleeding disorders. We also have vWD patients. Interestingly, we have more male patients with vWD than female. Of course, we understand that there is enormous work ahead of us, but we have great hopes! We are very happy that you have accepted us! Let us never give up! I am a mother of two sons with haemophilia, and there was a moment in my life when I kind of gave up and did not know how to go on. Therefore, I want to call upon everybody that we have to fight not only for existence of those who we love, but for their ability to have full quality of life! Thank you very much!

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