Five persons awarded recognition for their efforts to boost more care and support for rare disease sufferers
The National Alliance for Rare Diseases currently has 200 members suffering from rare diseases. This was stated by Michelle Muscat who is the founder and Chairperson of the Alliance while she was speaking during an activity marking three years of the foundation of this NGO.
Ms Muscat awarded five persons for their contribution to boosting the work needed to provide care and support for persons suffering rare diseases. The five awarded were Roderick Borg who manages a canteen in a private school, entrepreneur Alfred Fenech, researcher into rare diseases Professor Alex Felice, the Head of a Primary School Norbert Pulis and Michael Farrugia who is a Managerial Consultant in the Health Sector.
She said when she first started raising awareness of rare diseases there were only five members in the Alliance. With the support and commitment of various entities as well as Health Sector professionals, the Alliance worked hard to achieve, among other matters, a national register of rare diseases in Malta.
Ms Muscat said she will continue to work at national and European level to raise even greater awareness of rare diseases and the research that should go into them. She said she had just addressed a UN committee in New York in which she appealed that all countries have an agenda that gives primary importance to rare diseases as this is needed worldwide.