CORPORATE
A Letter FROM A MUM
M
y child Ana is affected with a rare disease called Tyrosine Hydroxylase Deficiency. It is an inborn neurometabolic (neurotransmitter) disease. Ana was diagnosed in Heidelberg, Germany, when she was 14-months-old. That was back in 2014. There she started with the treatment and had a miraculous response to it. We were buying the medications in Germany for a year because we were told that there was no adequate medication in Serbia. In 2016, I initiated a delivery of various medication to the Children's Hospital if Novi Sad.
I got the support of a pharmacist from the Hospital who got in touch with INO-PHARM. Their response was quick and positive. The first initiative was launched in April 2016 and Ana got L-DOPA in Serbia in October 2016. She has been getting her medications regularly ever since. Even though my child is the only child with THD in Serbia and therefore the only child who needs the L-DOPA medication, INOPHARM demonstrated that they are the company with a big heart. They carried out the entire procedure related to import of an
HRABRIŠA ASSOCIATION The Hrabriša Association was founded on 21.12.2016 to support families with children suffering from neurotransmitter diseases, additional reactive dystonia and other neurometabolic diseases to get adequate diagnosis and treatment in the Republic of Serbia and abroad. A little girl called Ana was the main reason for establishing the association. She showed fantastic bravery in the fight against the neurotransmitter disease tyrosine hydroxylase deficiency, boldly fighting for diagnosis and treatment, despite encountering many obstacles along the way. Her strong desire to remove the obstacles and help other families with the same challenge was the basis for forming this association. Because the treatment is easier and the results of the therapeutic intervention better if a neurotransmitter disease is diagnosed in its early stage, that the therapeutic intervention begins immediately and that there is a strong desire to help the little ones to be diagnosed, be prescribed the necessary therapy more quickly, and to raise awareness about the these diseases and treatment options were the main reasons the Hrabriša Association was formed. Last year, two more children were diagnosed after which the INO-PHARM Company provided support in importing the required medicines. www.hrabrisa.rs
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GERMANY 2020
unregistered drug. I am so grateful that they recognized that my child is my whole world. As a result of cooperation between the Hospital, INO-PHARM and myself, Ana is now a typical 5-year-old, properly developing thanks to the regular supply of L-DOPA. Our story was the reason to launch the Hrabriša Association (Lil' Brave One, in English) to help families in similar situations to get a proper diagnosis and treatment on time. Sooner they start the treatment, the better results will be. Ivana Badnjarević, Ana’s mum
NATIONAL ORGANIZATION FOR RARE DISEASES OF SERBIA – NORBS The National Organization for Rare Diseases of Serbia (NORBS) was founded in 2010 as an alliance of associations dealing with the problems of persons diagnosed with rare diseases and their families. NORBS assembles 30 rare diseases associations and over 150 individual members suffering from ultra-rare diseases - a total of over 5,000 members diagnosed with 300 different diseases. NORBS's mission is to improve the position and quality of life of people with rare diseases and disabilities resulting from a rare disease on the territory of the Republic of Serbia. For more information on NORBS, please send an email to office@norbs.rs. INO-PHARM, member of PHOENIX Group Serbia, is a company which possesses specialized knowledge regarding providing support to import of unlicensed medicines, special and innovative therapies.
