Vice-president: Dr. Lidia Georgieva MD MDc PhD, Epidemiologist,

Secretary: Dr. Maria Nacheva MD. Ph. D. Pediatrician, Geneticist

lay group representatives: Ivan Ivanov, Stephan Arnaudov, Antonina Dimitrova

volunteers: Svetoslav Dimitrov,Mariaz Georgieva, Maria Laleva

• To support scientific investigations and research programs related to NF.
• To collect and distribute up-to-date scientific information concerning NF.
• To cooperate with other similar national and international organizations and institutions.
• To promote public awareness and spread information on NF.
• To promote and improve contacts and effective collaboration among different medical specialties in order to ensure better management of the NF patients.
• To build regional multidisciplinary teams of specialists and to provide an improved exchange of information between them.
• To collect data about NF sufferers and their families in the country and to establish a national informational NF database.
  

The Association acts as a support group for affected people and their families, helping them to cope with the disease:

• Provides genetic counseling for the affected patients and families.
• Provides help for social integration of disabled people.
• Promotes contacts between affected people and their families.
• Works on programs for increasing awareness of NF among patients, families, health and education professionals.
• Regularly updates a list of medical specialists concerned with NF (and keep informed medical society and public) in order to provide patients and families affected by neurofibromatoses an improved access to better treatment.
• Referrer affected people to regional NF multidisciplinary teams.

• To design and carry out a prevalence study on NF in Bulgaria and it's risk factors.
• To enfold and systematize all patients and families with NF
• To perform a selective screening with a view to achieve early diagnostics and adequate treatment of the affected persons. To provide genetic counseling for the affected patients and families.
• To plan activities for increasing awareness of medical staff (doctors and nurses) - workshops seminars lectures and preparing brochures. Our intention is to provide an effective collaboration among different medical specialties in order to ensure improved management of the NF patients
• Increasing awareness of NF patients and their relatives.
• Elaborating a public education program

• Carrying out a follow up study.
• Issuing a leaflet.
• Writing a practical manual for the management of NF.
• We are considering the possibilities about enlarging the NFW by including members representatives of patients and their relatives.
• Create a DNA genetic bank from affected patients and members of NF pedigrees.