Today marks Rare Disease Day 2021, in a symbolic event held in Malta, the National Alliance for Rare Diseases Support Malta, pledged to continue to be the voice of these people who individually might be a minority but collectively in their diversity they make up a big force.
Founder and President Michelle Muscat, said that today’s event is symbolic, signifying the children who cannot be carefree and play, their parents who cannot let them loose and free to venture out, and symbolises all those with a rare disease or condition whose life is certainly not a playing field and who at most times life for them is not on an equal playing field.
Whilst thanking the Government for its vaccine plan that is currently being rolled out, she urged health authorities to keep rare disease patients among the vulnerable groups that are being considered.
Ms Muscat added that, “till now only a few of the patient members and their families have been called to take the vaccine.”
Ms Muscat reiterated the importance of awareness on rare diseases among health care professionals, policy makers and the community in general.
The National Alliance for Rare Diseases Support – Malta, has said that as at 2020, The Malta National Register for Rare Diseases lists approx 4 thousand patients suffering from a rare disease. However it is estimated that there are approx 27,000 people suffering from a rare disease/condition.
Some 30 million people in Europe alone are living with a rare disease – there are 6,000 diagnosed rare diseases.
The National Alliance for RDS malta is a member of Eurordis, of Rare Diseases International and sits on the United Nations Ecosoc Committee for Rare Diseases.
Also today, The Alliance honoured Dr. Chris Barbara, Profs. Anthony Seracino Inglott, Dr. William Buttigieg and Mrs. Josette Azzopardi for their sterling work and support to the Alliance since its inception 6 years ago.