(+356) 99912373 [email protected]

About Us

Mission Statement:

The National Alliance for Rare Diseases Support – Malta shall advocate for all rare disease patients and other rare disease groups at national level and will be a powerful stakeholder in society.

 

Objectives

The National Alliance for Rare Diseases Support – Malta shall have the following objectives:

To provide support and information to patients and relatives going through a crisis related to the mentioned illnesses and to other Alliances working in the field of rare diseases.


To educate society in respecting, accepting, and helping as much as possible patients of rare diseases and their relatives.


To raise public and political awareness on rare diseases and conditions.


To promote and present the interests of the Alliance’s members to the notice of local administrations and authorities, international Alliances, and other authorities.


To raise funds by means of membership subscriptions or other non-commercial initiatives for the attainment of any or all the purposes and objectives of the Alliance in such amounts and in such manner as may be authorized by the Executive Committee.


To form part of any national or international association whose aims are similar to that of the Alliance.


To encourage and promote research on rare diseases and conditions.


To do all that which is ancillary, incidental, or conducive to the attainment of the above objectives.

President's Message

Since February 2014 the cause of rare diseases in Malta has been put on the national agenda through the work and actions of The Marigold Foundation. The Marigold Foundation started a two year long campaign on the need to set up a national alliance on rare diseases. Through its fund-raising activities The Marigold Foundation raised enough funds to set up the National Alliance for Rare Diseases Support – Malta. In the meanwhile, we started working closely with EURORDIS, establishing a link that has served to promote rare diseases both on the national and international agenda. It was my honour and pleasure to accept to be European patron of EURORDIS for the last three years and an even greater pleasure to co-chair the EURORDIS Black Pearl Event alongside Princess Ann de Ligne of Belgium in 2016.

Through the setting up of the National Alliance for Rare Diseases, which brings together all the stakeholders including patients and their relatives, researchers, medical professionals and other organisations representing specific conditions, representation of patients has been magnified with more care, support and awareness increasing for the benefit of the patients and their relatives. The National Alliance and its founder, The Marigold Foundation, worked incessantly so that a National Directory will be started in collaboration with the Ministry of Health. This National Directory was launched in 2016. This National Directory is making it possible to trace rare conditions and diseases on our small island state, where rare is even rarer.

The Alliance, in collaboration with the Ministry of Health and the Ministry for Social Dialogue, Consumer Affairs and Civil Liberties, is currently working to raise the rare disease issue at the European Presidency during Malta’s tenure. The Alliance is also working closely with EURORDIS and RDI to help them raise the agenda of rare diseases on a United Nations platform.

It is with gratitude that I express my satisfaction for the deep understanding and support shown by The Marigold Foundation for carrying the flag for rare diseases awareness and support. Without their initial enthusiastic work to begin the start of this Alliance, we wouldn’t be today working to increase support services for the rare people hit by a rare disease. Through the work of The Marigold Foundation, we have been marking Rare Disease Day and Rare Disease Month with various events including lectures at the University of Malta, patient gatherings, fund-raising dinners, art and cultural expositions, seminars and lectures. We look forward to further collaboration in the months and years to come.

Finally I dedicate my work on this very special and rarely understood cause to the memory of my mother who was diagnosed with a rare disease which took her life in just three years. My personal experience of living with and caring for someone with a rare condition has enabled me to empathise with similar patients and relatives who know that there is no real and proper diagnosis, no medication no cure and most times no real understanding of what that person is going through. Hopefully this Alliance provides a shoulder to cry on and a bigger family with whom to share a different yet similar journey.

Our Sponsors

The Marigold Foundation – BOV in the Community – launched in February 2014, the Foundation offers valuable support wherever it is needed. The objective is to positively empower people and to work with them to raise standards, support initiatives, and strengthen voices.

Who We Are

Michelle Muscat

Michelle Muscat is the President of the National Alliance for Rare Diseases Support – Malta. She is also Chairperson of The Marigold Foundation – BOV in the Community and a daughter of a patient with a rare condition.

Josette Azzopardi

Josette Azzopardi (josette@rarediseasesmalta.com) is the Secretary and a member of the National Alliance for Rare Diseases Support – Malta. She is also a mother of three sons and a Learning Support Assistant with special interest in Rare Diseases and Inclusive Education.

Dr Alistar De Gatano

Dr Alistar De Gatano (alistair@rarediseasesmalta.com) is a member of the National Alliance for Rare Diseases Support – Malta. He is also a patient suffering from a rare condition and legal consultant of the National Alliance for Rare Diseases Support – Malta.

Prof Alex Felice

Prof Alex Felice is a member of the National Alliance for Rare Diseases Support – Malta. He is also a professor at the University of Malta and a Visiting Consultant (Thalassaemia and Molecular Genetics) at Mater Dei Hospital. He is an expert in rare blood disorders such as thalassaemia and rare disease biobanking. He is the author of numerous scientific articles on these matters and a member of several international scientific societies. He is the Malta representative on the board of the BioBanking and BioMolecular Research Infrastructure of the E.U. and the EuroBioBank (Rare Disease) consortium.

Bjorn Formosa

Bjorn Formosa is a member of the National Alliance for Rare Diseases Support – Malta. He is also a patient suffering from ALS and campaigns continuously for ALS patients through the ALS Malta Foundation which he founded.

Ivan Grech

Ivan Grech is a member of the National Alliance for Rare Diseases Support – Malta. He is a musician, front man of Maltese band Winter Moods and is also a member of the board of The Marigold Foundation – BOV in the Community.

Anna Sultana

Anna Sultana is a member of the National Alliance for Rare Diseases Support – Malta. She also suffers from a rare condition. She is an active member and supports the Alliance’s objectives and events.

Dr Dennis Vella Baldacchino

Dr Dennis Vella Baldacchino is a member of the National Alliance for Rare Diseases Support – Malta. He is also the Chief Medical Officer at Mater Dei Hospital. He is a Public Health consultant by profession with specialisation in Public Health, Family Medicine, and Emergency Medicine.

Dr Robert Xuereb

Dr Robert Xuereb is a member of the National Alliance for Rare Diseases Support – Malta. He is also a member of The Marigold Foundation and a cardiologist. Dr Xuereb is the Cardiology Chairman at Mater Dei Hospital.

Secretariat Assistants

Jennifer Xuereb is the Assistant Secretary of the National Alliance for Rare Diseases Support – Malta. She is also the Executive Secretary of The Marigold Foundation – BOV in the Community.

Grace Baldacchino (grace@rarediseasesmalta.com) is a Secretariat Volunteer of the National Alliance for Rare Diseases Support – Malta.

Doreen Zammit (doreen@rarediseasesmalta.com) is a Secretariat Volunteer of the National Alliance for Rare Diseases Support – Malta.

Special Advisory Contributors

H.E. Ray Azzopardi is an honorary member of The National Alliance for Rare Diseases Support – Malta. He is also the Ambassador of Malta to the Kingdom of Belgium.

Dr William J Buttigieg is an honorary member of The National Alliance for Rare Diseases Support – Malta. He is also a representative of the Alliance in New York and the United Nations.