Specialty Group on Rare Neurological Diseases (RND)

Chair: Antonio Federico

e-mail: antonio.federico@unisi.it

About

Rare neurologic diseases (RNDs) are one of the many inequalities of our health system. A patient with a rare disease is doubly unfortunate: he has a disease like many others but has troubles in finding a doctor expert in his disease. They represent more than 50% of all the rare diseases, giving to neurologists an important role in the diagnosis and therapy.

The aims of the RNDs Specialty Group are to improve diagnosis and treatment of RNDs, to provide a forum for discussion and exchange of experience on all issues related to RNDs, to advise and assist all the international organization in promoting prevention of RNDs.

The specific objectives are to stimulate the interest of world neurologists to RNDs, facilitating their diagnosis and therapy when possible; to promote collection of epidemiological data across the world; to facilitate development of different models of cross-border health care ; to promote the exchange of ideas and information regarding quality of life issues; to develop and disseminate best practice guidelines; to collect data on the facilities for diagnosis of RNDs in the different countries; to analyze the attitude of world neurologists to RNDs and to identify their care organization in the different countries; to collaborate with European Networks and other organizations for RND (NORD, Orphanet, Eurordis, ERNs, etc); To facilitate neurologists education on the topic ; to act as information service on RNDs , that will be able, with the assistance of experts present in the Working Group, to answer questions from patients, families and doctors and finally to strictly collaborate with Family Associations and Disease Specific Family Groups.

Several people expressed their interest to participate to this activities, that will be enlarged to other people from Asia, Africa, North and South America, Europe, Middle East, Japan, China, etc.

Specialty Group Members