The Second National Conference on Rare Diseases was held on September 9th – 11th 2011 in Plovdiv. It took place at the Congress centre of the Novotel – Plovdiv. Dr. Youri Anastassov and Dr. Parvan Voynov attended the forum and presented the already started
Project about creating a National Register of Patients with Facial Anomalies.
Several reports on functioning registers of rare diseases including anomalies in the region of Pleven (Dr. Katya
Kovatcheva) were presented during the first day of the Conference. All of the presented registers were epidemiologically based, containing information for narrow specialists and for the medical statistics.
The National Register of Patients with Facial Anomalies project is orientated towards the patients and the specialists treating them. It is expected that the Register will be accessible via the Internet with a very high level of security in order to protect the personal information about patients and the specialists, treating them. The project has been implemented with the financial support of National Science Fund under the Program Stimulating Scientific Researches of the State Universities. The contractor is Medical University – Plovdiv. The scientific team is represented by: dr. Youri Anastassov (Project Leader), dr. P. Voynov, dr. R. Khater, dr. R. Velikova, T. Spasova, S. Maneva. The official project partner is Association of Patients with Facial Anomalies and Their Parents – ALA. The project is in its first phase – Development and Generation.