Objectives

 

Specific Objectives:

SO1: developing a new specific rare diseases training program by creating a class (curricula) of rare diseases and medical genetics, and by assigning it EMC points for medical doctors and nurses.

SO2: setting a suitable environment and an integrated approach of the medical act for patients affected by rare diseases, by elaborating specific medical practice guidelines.

SO3: improving specialists’ access to training programs and to exchanges of experience and practice guides regarding rare diseases and medical genetics.

SO4: improving the competence level and technique capacity of specialists through: a specific course on rare diseases and medical genetics, credited with EMC points, for 1000 medics and nurses from specialties relevant to the multidisciplinary management of rare diseases; 10 four-days NGS workshops, held in Craiova, with experts from Romania, the Netherlands and/or  France.

SO5: raising awareness and accountability among specialists by realizing a specific awareness and early diagnosis campaign in every region.

SO6: increasing the involvement of Romanian specialists in European information exchange initiatives, through: 1 international program in France and the Netherlands in which 100 medics will take part for one week (medics from all the regions, selected from those who have finalized the EMC points credited training course); 1 national program in Zalau, in a day-center for rare diseases patients, with 80 participants (10 from each region) who have completed the training course, for one week.