Austria, August 21,2019- The successful partnership between the Immunologische Tagesklinik (ITK), a privately run outpatient immunology clinic in Vienna, and the US-based Jeffrey Modell Foundation (JMF), committed to increasing awareness and improving the situation of people with PID, was launched 15 years ago. Since then, over 750 patients in Austria have benefited from the ITK’s outstanding scientific and medical expertise. In many cases, years of suffering from serious infections have been alleviated for the first time by precise immunological diagnosis and consequently targeted treatment. However, estimates point to many more potentially affected individuals – tens of thousands of people in Austria with PID, that have still not received a precise diagnosis – so the ITK-JMF partnership is still as important as ever.

A fifteen year old boy from New York City, Jeffrey Modell, died in the eighties of the last century – thus ending a life cut short by illness, but also full of joy. His death was the result of a PID and it changed his parents’ lives forever. In 1987 they founded the Jeffrey Modell Foundation (JMF), which fights to raise awareness of PID around the world and is committed to ensuring affected patients an effective treatment. The foundation sets up partnerships with centers around the world, that stand out for their expert scientific quality and profound medical experience and dedication. One such partnership, focused on Austria and Eastern Europe, was launched 15 years ago in Vienna – with the ITK.

A Place to Provide Support for PID Patients

The ITK has been supporting patients suffering from PID in Austria for the past 30 years and has been conducting internationally recognized research from the beginning. With its founder, Professor Martha Eibl, it also played a significant part in drawing up the World Health Organization (WHO) coordinated, standardized classification of the at present more than 350 known hereditary immunodeficiencies, published by the International Union of Immunological Societies (IUIS). As Professor Eibl explains: “Just two decades ago, there were less than ten known causes of PIDs. But thanks to coordinated research performed around the globe, the molecularly defined number is now over 350 and continuously rising. This now available exact knowledge has opened new avenues for precise diagnosis and treatment. Most clinics lack this very special medical expertise and in addition health insurance funds don’t always accept to reimburse them the total costs for a precise diagnosis, which only saves costs in the long run.” The partnership with the JMF has enabled the ITK to expand its operations in Austria and abroad over the past 15 years and help more and more PID patients. It has succeeded in raising physicians’ awareness of these rare diseases and now provides highly specialized expertise to support and secure diagnosis, as well as provide recommendations for prophylaxis and, if necessary, efficient treatment.

The ITK was among the very first of Jeffrey Modell Diagnostic Centers for PID to open in Europe, with a focus on Austria and Eastern Europe fifteen years ago, and it has provided assistance to over 750 patients diagnosed with these rare diseases and have been cooperating with centers in Poland and The Czech Republic since then. These patients often suffered persistent and or recurring illnesses and went from clinic to clinic without PID being suspected. Supported by the JMF, the ITK is continually expanding awareness and providing state of the art diagnosis and treatment in Austria and cooperating with countries in central Europe. Basic data have thus been collected for in this area for the first time giving an insight into the current knowledge of PIDs and the treatment procedures used today. As a result, targeted steps have been taken that have increased the awareness of PIDs among physicians and the public and paved the way for modern treatment concepts. Furthermore, it was spreading the information on state-of-the-art immunological diagnoses and individualized treatment. However there is continuous further effort needed.

Many Austrians Affected

“International studies have shown that about 1% of the population is affected by PID,” says Prof. Martha Eibl. “That means there are 80,000 patients in Austria with PID, of whom only a few received an accurate diagnosis at the time they develop a severe illness. Numerous PIDs differ fundamentally from one another, and precise diagnosis requires the link between clinical status and immunological laboratory findings.” Many patients receive an incorrect diagnosis and not the proper treatment. In consequence long-term recurrent and severe illness can result in huge and unnecessary costs for the health system.

Links:

Immunology Outpatient Clinic /

Immunologische Tagesklinik http://www.itk.at

Jeffrey Modell Foundation http://jmfworld.com/