by To mark the occasion of Rare Disease Day, Voluntary Health Services (VHS) along with Mediscan has envisioned a Centre of Excellence (COE) which would be dedicated to the diagnosis and treatment of rare diseases. As a prelude to the launch of the centre, clinical services have been started by for rare disease patients at VHS. The services would include medical and surgical management, rehabilitation services, day care facilities and in-patient facilities.
Commenting on the need for such services, Dr. Sujatha Jagadeesh, HOD, Dept. of Clinical Genetics, Mediscan said, “The needs of patients suffering from rare diseases have never been a priority. More often than not, these patients are not aware of the appropriate facilities which handle such cases and this ultimately results in delayed or no diagnosis and treatment. Thus, the need for dedicated services for rare diseases was felt which the patients can avail. We are happy that such services are now there in the state of Tamil Nadu which means that the patients in the state would not have to travel to other far off states where the facilities were available.”
The aim of inaugurating the services was primarily to provide a holistic and comprehensive approach to deal with the variousneeds of rare disease patients. “The services have been launched keeping in mind the varied needs of patients suffering from rare diseases. With the latest technologies and a panel of expert doctors, it can now be ensured that the patients get precise and quality care. The services are the first in the state and we are confident that now we can tackle the health issue of rare diseases in a much better way”, Dr. Suresh S (VHS) elaborated further.
Rare diseases, although uncommon, affect quite a larger number of people in the country. Often the condition of the patients becomes severe and chronic and hence, it is imperative for them to receive timely care and treatment. “It is a proven fact that if timely intervention can be accessed by the patients, they can lead better quality lives.We are confident that the services would be very effective and would provide relief to the patients to a great extent.The launch of the services is a very good step and will definitely help in improving the quality of life of many patients”, said Mr. Karunakaran (State Secretary, Lysosomal Storage Disorders Society (LSDSS)).
