The first Maltese book for children focusing on awareness regarding rare diseases was launched by the National Alliance for Rare Diseases.
The book, titled Special Just Like You and Me and published in collaboration with the Swiss Orphancare Foundation, is aimed at primary schoolchildren and will be distributed for free at state, private and church schools.
A copy was presented to President George Vella during the launch.
The book presentation was followed by a conference for educators and school communities.
Michelle Muscat, founder and president of the National Alliance for Rare Diseases Support Malta, emphasised the need for school communities to empower themselves with knowledge about this cause, embrace their rare patient students and provide adequate support.
The conference was addressed by Yan Le Camm, CEO of the European Organisation for Rare Disease Support (Eurordis), who emphasised the need for a European and a national action plan.
Frank Grossman from the Swiss Oprhancare Foundation explained how collaborations among patient organisations such as the one he represents and Rare Diseases Malta (RDM) generate valuable information that can be shared, supplying patients with an extra helping hand.
The conference was also addressed by professor Christian A. Scerri, who explained the role of a geneticist. Similarly, Christopher Vella explained the new role of the Genomic Care coordinator at Mater Dei Hospital whereas R. Blundell from the Faculty of Education spoke about the importance of careers in medicine and the need to raise awareness of rare diseases among medical students.
The conference was concluded with an address by Clifton Grima, Minister for Education, Sport, Youth, Research and Innovation, who reiterated his support to the cause and by Chris Barbara, clinical chairman of the Pathology Department, Mater Dei Hospital, who emphasised the need for more collaboration between policymakers and patient organisations such as RDM.
