The Malta Alliance for Rare Diseases (MARD) is a non-governmental patient-driven National Alliance composed of various stakehoders and individuals active in the field of rare diseases in Malta. MARD is affiliated to the European Organisation for Rare Diseases (EURORDIS), the voice of 30 million people affected by rare diseases throughout Europe, in collaboration with the Malta Health Network (MHN)
. EURORDIS represents over 600 rare disease patient organisations in more than 50 countries, covering at more than 4000 rare diseases. MARD aims to improve the quality of life of people living with rare diseases in Malta through advocacy at National level, support for research and medicines development at European level, facilitating networking amongst patients and patients’ groups, raising awareness by means of other actions designed to reduce the impact of rare diseases on the lives of patients and their families. Extract Notes from the report (2012) carried by the Official Information Centre (Malta) for Rare Diseases:-
There is no official information centre on rare diseases in Malta to date (2012). Help line:-
Although there is no official help line for rare diseases, the agency "Sapport" provides support by telephone to all disabled people that request it. This service is funded by the government. Other sources of information on rare diseases:-
There were no further developments in the sources of information on rare diseases in 2012. Good practice guidelines:-
No best practice guidelines for rare diseases have been produced at national level in 2012. Training and education initiatives:-
There are currently (2012) no initiatives specifically dedicated to rare disease-specific training and education in Malta.
