Thalassaemia International Federation
The Thalassaemia International Federation represents a group of chronic, hereditary disorders affecting the haemoglobin molecule, which are the commonest of a much wider group of chronic disorders, each one rare in itself but which as a whole affect a very large proportion of the population.
These rare and chronic disorders are under the general title of birth defects and are given a secondary role. Birth defects are in general underestimated. If we consider that there are more than 5,000 rare diseases identified most of which are congenital and chronic and which according to Western sources affect 6-8% of the population, even if each disorder is rare. This is not a negligible health burden when considering the chronicity and complexity of care that they require.
There are well documented strategies which can address both the prevention and the management of these disorders but which are not included in health planning of most Member States. This despite WHO Resolutions WHA 59.20 and EB118.R1 on haemoglobin disorders, as well as WHA63.17 on Birth Defects.
Through this statement, we would like to urge Member States to:
RECOGNISE the need for a closer look at these disorders and to consider a separate approach in planning health services from the strategies and plans under discussion;
PROMOTE separate policies from the major noncommunicable diseases, which are so far promoted in the WHO agenda for noncommunicable diseases.
Finally, we would like to reiterate our firm commitment to support all WHO efforts in increasing access to medicines.