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A VI-a Conferinta internationala PWS si Prima conferinta de Boli rare din Romania

Things are moving fast for rare disease patients in Romania. A rare disease conference took place in Cluj-Napoca, the ancient centre of Romanian culture and civilisation in picturesque Transylvania, on 24 June 2007. The conference, the first of its kind to take place in Romania, was organised by the Romanian Prader-Willi Association, on the back of the 6th International (and 1st Romanian) Prader-Willi Syndrome Conference. The event gathered 340 attendees from the patient, scientific and government communities – quite an achievement. The meeting started with the Prader-Willi conference, which lasted 3 days and included four different programmes running in parallel: scientific, caretakers, associations, and parents and professionals programmes. ‘People came from all over Europe and the world, including from countries such as the US, Japan, and Argentina,’ says Dorica Dan, President of the Romanian Prader-Willi Association, who also sits on Eurordis’ Board and co-organised the conference. ‘The next conference will be held in Taiwan in 3 years’ time,’ she adds.

‘Information on rare diseases in Romania is hardly accessible by the general population,’ comments Prof. Dr. Maria-Julieta Puiu, co-organiser of the conference. ‘And information to patients, parents, specialists, authorities, and the medical and social sectors is not enough. What we really need is high-quality information at every level.’ Dorica Dan agrees, ‘This is why we decided to organise a rare disease conference on the fourth day following the Prader-Willi event.’ The conference was an opportunity to introduce the newly formed Romanian Alliance for Rare Diseases (RONARD). ‘We are in the process of defining our strategy,’ says Etelka Czondi, who works for the alliance, ‘and we are hoping that Eurordis will provide us with some help in this respect. We also want to take part in the first European Rare Disease Day organised by Eurordis on 29 February 2008.’ The topics covered by the conference were extremely varied: Christel Nourissier, Prader-Willi France, Eurordis Board Member and co-organiser of the conference, talked about rare diseases as a public health priority in Europe; Ségolène Aymé, Director of Orphanet, made a presentation on information tools for rare diseases, and she presented the work conducted by Orphanet for the rare disease community; a comparison of the experience of care in several European countries was put forward by Domenica Taruscio, from the National Centre for Rare Diseases at the Instituto Superiore di Sanità (Italy); genetic testing and genetics research centres were presented by several Romanian geneticists; finally, international cooperation and networking were covered by presentations made by Eurordis and by the Taiwan Foundation for Rare Disorders (TFRD).

The day before the rare disease conference, Eurordis met with
several Romanian rare disease organisations, such as PKU Life Romania, the Romanian Williams Syndrome Association, Casa Faenza (working with autistic children in Romania), and Orphanet Romania. ‘The meeting was the opportunity to discuss difficulties encountered by patients in Romania,’ says Camelia Livieratou, from the Williams Association. ‘Patient organisations are very new in our country and meeting each other is extremely important. I learned about many ongoing initiatives and I felt encouraged, not only to continue, but to do even more. Eurordis’ work not only produces professional results, but is also inspirational.’ Eurordis will continue to support the establishment of rare disease patient organisations in Romania, and welcomes RONARD as an observer in the Eurordis Council of National Alliances (CNA). Rare disease patients in Romania still have a long way to go, but judging by the level of energy displayed at the conference, things will keep moving fast.