The Nikolas Symposium and Research

PATIENTS ADVANCING RESEARCH

 

One Nikolas Kontoyannisof the major progresses when dealing with rare diseases is outlining a classification system that can be used by doctors around the world as a common database. In 1987, the Writing Group of the Histiocyte Society published the first widely accepted classification of histiocytic disorders, and firm diagnostic criteria were established for these disorders based on clinical and histological features. Histiocytosis is a general name for a group of syndromes that involve an abnormal increase in the number of immune cells called histiocytes. There are three major classes of histiocytoses: Langerhans cell histiocytosis (LCH), which is also called histiocytosis X, Malignant histiocytosis syndrome (now known as T-cell lymphoma) and Non-Langerhans cell histiocytosis (also known as hemophagocytic syndrome).

 

Elizabeth & Paul KontoyannisAt the time of the publication of this classification, Paul and Elizabeth Kontoyannis, whose son Nikolas had been diagnosed with LCH some years before, wished to promote understanding of these enigmatic diseases and so came together with research-minded physicians to organise the first Nikolas Symposium. “We started by talking to top practitioners of the field of the time, Dr Pritchard, Dr Favara, Dr Chu. Together we formulated the idea to create a partnership with top scientists, top physicians, parents and patients. The word “symposium” has the meaning of friendship and togetherness implied in it. The social setting and the symposium environment are conducive to relationship and network building, which is so important for rare diseases. By associating top scientists and inviting them to the first symposia, we managed to organise a worldwide network of scientific contacts that now makes up the Nikolas Symposium ‘Family’. From the outset, the meetings deliberately set out to harness the motivation of parents to help patients, the expertise of doctors who treat these diseases and to share their experience,” says Paul Kontoyannis.

 

At first, scientists were reluctant to participate in such meetings but the doctors involved in the project managed to convince them. A piece of advice from Nikolas’ father for rare disease patient organisations who want to get scientists interested in “their” disease: “Scientists are human. Embrace them. Their lives are hectic. Help try to make them feel that ‘your’ disease is important. Be human with them.”

 

The first symposium was held in 1989 and where there was experience sharing, voicing of difficulties that patients and parents meet in everyday life, there was no beating about the bush. The Nikolas Symposium had a strong research focus and was set up to unearth a cure for LCH. Thus the first topic was: “LCH – aNikolas Symposia logo | logo du Nikolas Symposia | Insignia de Nikolas Symposia | Marchio di ECRD | Logo de Nikolas Symposia | Firmenzeichen – Nikolas Symposian immunological disease? (Identified avenues for future research and the importance of determining clonality).”

 

Three organisations work hand in hand for the Symposium and serve all three communities (patients and families, clinical researchers, doctors): Artemis, the Greek patient organisation for histiocytosis, the Histiocytosis Research Trust and the Nikolas Symposium. “The Histiocytosis Research Trust (HR Trust) is a British parent organisation having the same main functions as Artemis. The three organisations work closely together. The HR Trust also has a first class scientific committee headed by Professor Beverley whose main function is to properly evaluate the research proposal presented. Research proposals are funded by common efforts of HR Trust and Artemis,” says Mr Kontoyannis who serves as president to all three entities.

 

Funded privately by parents and patients, the Nikolas Symposium really has been a catalyst for research. The clinical and pathological features of the disease are definitely better understood than in 1989. In 2005, Nature magazine published an article (Professors Beverley and Pritchard were amongst the authors) underlying how the progress in LCH research was induced by the Nikolas symposium. And the good work is not over. “We currently have funding for a research project called: ‘Development of Gene Therapy for haemophagocytic Lymphohistiocytosis’. The project is being undertaken by Professors Bobby Gaspar and Adrian Thrasher, at UCL Institute of Child Health (London) and has been fully vetted through our scientific review board. The head of the HR Trust’s Scientific Committee, Professor Peter Beverley, has been involved with the establishment of the peers committee. Professor Beverley has recruited four additional independent scientific arbitrators for committee. This is a joint program between Greece (Artemis Association/Nikolas Symposium), UK (Histiocytosis Research Trust) and Belgium (Langerhans Cell Histiocytose Belgium v.z.w.)”. In fact, the good work will continue until the Nikolas Symposium’s motto comes true: “In search of a rational cure”.

 

Author: Nathacha Appanah
Photo credits: © Artemis & wikimedia

 

 

 

 

Page created: 22/02/2010
Page last updated: 06/08/2013
 
 
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