Launch of the Rare Diseases Campaign 2022

1 February 2022

Launch of the Rare Diseases Campaign 2022

The National Alliance for Rare Diseases Support Malta has this morning launched the 2022 nationwide Rare Diseases Campaign.

The launch was held at the Parliament Foyer under the auspices of the Speaker of the House, Dr Angelo Farrugia.

Speaking during the launch, the President of the National Alliance, Michelle Muscat called for local policy makers to support the Alliance’s call for a National Action Plan on rare diseases based on the European Action Plan that is currently being advocated for by EURORDIS of which the Alliance is an active member.

A National Action Plan will work towards three goals

1. to ensure that people stop losing their lives too young from rare diseases

2. to improve the quality of life of people living with a rare disease

3. to ensure that Europe and Malta as its member leads in rare disease innovation.

There is currently no overarching strategy for rare diseases both at a local and European level, meaning that for the best possible treatment, care and research experts across Europe need to collaborate.

Michelle Muscat said that National and European policy makers should recognize the complexity of these issues and the importance of a ‘one health’ approach with measurable goals and strategic plans that are aligned with the UN Sustainable Development Goals. Muscat said that it was an honour for the National Alliance for Rare Diseases Support Malta to be part of the ECOSOC Committee on Rare Diseases that pushed forward the UN Resolution that was adopted in December 2021 by the United Nations General Assembly. Notably, the European Union Members States including Malta, all of which voted in favour of the resolution, have acknowledged the existing barriers and challenges that the 30 million people living with a rare disease in Europe face in their daily life and through this vote have expressed their political determination and firm commitment to act immediately by having a plan that will ensure that no one is left behind by 2030.

Michelle Muscat thanked all the different stakeholders that form the Alliance including researchers, geneticists, genetic councilors, health professionals and the patients and their family/careers. Mrs. Muscat reiterated that while a rare disease may affect an individual there are numerous rare diseases that affect numerous individuals.

The National Alliance for Rare Diseases Support Malta will continue to ensure that its members will have a voice in our society and across the world and to make sure that the United Nations sustainability goals are fulfilled.

The Alliance will be advocating for more awareness about rare diseases through a month long campaign starting with a week long initiative ‘Rare in the City’ held under the auspices of The Speaker of The House.

FACTS

In Malta, it is estimated that there are 27,000 individuals living with a rare disease.
The National Alliance for Rare Diseases Support Malta is a member of EURORDIS, of Rare Diseases International and a member of the NGO Committee on Rare Diseases at the Economic and Social Council (ECOSOC) of the United Nations.

STATISTICS as at 2021

The Malta National Register for Rare Diseases lists approx 4k patients suffering from a rare disease. However, it is estimated that there are approx 27,000 people suffering from a rare disease/condition.

EU statistics