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We made the news!

It’s been a long time since we’ve published anything on our blog.  But today we had to! We needed to share our joy with all of you!  We’ve been added to the website Enerca, the European Network for Rare and Congenital Anemias.

Enerca is a network of professionals, research centers and hospitals that are committed to working together to discover the origin, evolution and cure of rare anemias.  Recently, Enerca dedicated a portion of one of their pages to our website.  In doing so, our website has been made visible to specialists throughout Europe.

Thank you!!!

Comments ( 3 )

  • Hi,
    I am 63 years male born on Christmas Island of Malay descendants, mum was born there too but dad was an Indonesian. I learnt that I have Haemoglobin E disease when I was in the late 20’s. In my school days I like to swim, running and play sports but didn’t last because I get tired too quick and takes time to recover. Now married with 3 grown ups living in Perth Western Australia since 1977. All my lives I have been healthy otherwise, Australia have 4 seasons and every change of season I catch to flu or hay fever, when that happens, it last at least 2 weeks and have to take lots of anti-biotic and pain killer. For the last 2 years I didn’t even have to take a panadol or anti-histamine and gain more energy. At my age, I have t be very careful.

  • hi .i am son is pkd.we are from china.My son was born in this year, three years old, hyperbilirubinemia, hospitalized for 9 days, systemic blood transfusion, and then diagnosed by genetic diagnosis. PKD 2 years and 6 months before the blood transfusion, the blood transfusion cycle gradually became 50 days. The six-month-old low Blood transfusion (hemoglobin 6 g blood transfusion) Liver and spleen are very large, then high blood transfusion (hemoglobin 9 grams or so blood transfusion) liver spleen not big bilirubin now 50 or so weak resistance other normal I want to know other PKD patients like us have some good The experience shared with us. His name is Minor Guo..What is your current situation? Hope to reply

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