Children suffering from these rare conditions have compromised access to effective and appropriate management for a variety of reasons including: (i) lack of scientific knowledge of their disease, (ii) lack of access to correct diagnosis, (iii) delays in diagnosis, (iv) lack of appropriate multidisciplinary healthcare, (v) lack of quality information and support at the time of diagnosis, (vi) undue social consequences, (vii) inequities and difficulties in access to treatment, rehabilitation and care, (viii) dissatisfaction with and loss of confidence in medical and social services, (ix) refusal by health professionals to undertake treatment and (x) lack of availability of orphan drugs.(Kole and Faurisson, 2010) Many of these issues are exacerbated in the context of low and middle income countries where overall healthcare resources are limited