Mrs Michelle Muscat, spouse of the Prime Minister and Chairperson of Marigold Foundation said she was very honoured to launch the first ever rare diseases support group: 'National Alliance for Rare Diseases Support Malta.'

Mrs Muscat stated that through this, Alliance Malta has joined other nations in offering support to people suffering from rare diseases. She said that the National Alliance for Rare Diseases Support was a new addition to the Marigold Foundation, which has been operating since 2014.

Mrs Muscat said that, apart from providing support and information to sufferers and their family members, the Alliance will also help raise awareness, and encourage further research. 

In Malta there are around 600 different rare diseases.  People suffering from rare diseases face lot of adversities chief among them is a long time for full diagnosis, the rarity of the disease itself  which makes it a very difficult and lonely process to find a cure if it is found at all.  Medication is also always too expensive and unaffordable and there are cases for which there is no medication invented yet. 

Mrs Muscat noted that there are already a number of individual entities in Malta working with people with rare diseases. In this regard, this national Alliance will take a central role in helping these organisations to take their cause to a higher level and to provide a network for patients to get the necessary support to lead comfortable lives as much as possible. Mrs Muscat emphasised that this new Alliance will do its best to offer its support.

Attending the launch was Mr Sean Hepburn Ferrer, Rare Disease Day Ambassador. Mr Hepburn Ferrer, who endured the loss of his mother Audrey Hepburn due to a rare disease, stated that he was honoured to offer his support to Malta.

He stated that sufferers of rare diseases have to face what he described as a "crushing loneliness". He added, however, that the advance in technology and the studies conducted on genomes, may one day help bypass the problems encountered in producing medication for such rare diseases.

Mr Sean Hepburn Ferrer is the eldest son of the late, beloved Audrey Hepburn, actress and dedicated philanthropist, and Mel Ferrer, actor, film director and producer. 

Sean Hepburn Ferrer is very well placed to be the Rare Disease Ambassador.  His mother, Audrey Hepburn, passed away from a rare disease that affects only one in a million.