|
|
VD: There is no adequate legal basis. Although there is a definition of centres of expertise in the National programme for rare diseases, it has to be regulated how these centres will work and who will finance their activities. Though not officially designated, there are currently well-functioning rare diseases centres of expertise. A very good example is the Centre for acromegaly at “Acad. Ivan Penchev” University Endocrinology Hospital, led by Professor Sabina Zaharieva. There we, the patients are followed up by highly trained medical professionals who have interned abroad and participated in international projects. Working in the only acromegaly centre in the country, physicians have succeeded to gain experience with many rare diseases patients. Patients could be also consulted by other profile physicians. The centre has also created a registry of patients with acromegaly, implemented by specially designed software. The centre works closely with the Neurosurgery Clinic at “St. Ivan Rilski” University Hospital, patients could undergo surgical treatment. The clinic has a laboratory certified for hormonal analysis. A project of our patient organisation is currently being prepared that will ensure a clinic psychologist, helping the patients to deal with the chronic disease and to adapt to the accompanying changes. I would like to take this opportunity to thank Prof. Zaharieva for everything she and her team are doing for us! Unfortunately, despite having many positive aspects, this model shows some shortcomings, which we hope will be cleared in near future. There are patients who are not covered by the work of the existing acromegaly centre, possibly because of economic reasons. Although this rare condition can not be followed up, nor adequately treated outside the acromegaly centre, many different clinics in the country and in Sofia periodically hospitalise such patients without sending them to the acromegaly specialised center. Also, this centralised scheme deprives the doctors from other hospitals to meet these patients and actually quite a lot of medical students and doctors have never seen a patient with acromegaly, which in our opinion reduces the opportunities for early diagnosis of the disease. I believe the proper regulation of the centres of expertise will find a solution to the existing problems.
|
