The “Rare Disease Day” campaign has reached its 9th edition this year, on February 29th, 2016, bringing once more, to public attention, the topic of rare diseases as a subject of medical, political and institutional concern. The initiative was founded by EURORDIS and its Council of National Alliances in 2008, triggering, ever since, a series of related events all around the globe, fastly turning from an European campaign to a world-renowned advocacy event that stands for dissolving ignorance and empowering collaboration for the better understanding and treatment of rare diseases. “Rare Disease Day” has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
The theme of Rare Disease Day 2016 “Patient Voice” – paying tribute to the millions of people whose lives are affected by a rare disease and also to their families, friends and loved ones, who stand by them and support them every step of the way – recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.
In particular, the Rare Disease Day 2016 slogan “Join us in making the voice of rare diseases heard” appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases.
People living with a rare disease and their families are often isolated. To this aim, the wider community can help to bring them out of this isolation and Rare Disease Day will foster this process amplifying the voice of rare disease patients so that it is heard all over the world.
The Gianni Benzi Foundation is honoured to be part of this world wide initiative, also acting as partner in the project InNerMeD-I-Network (Inherited NeuRoMetabolic Diseases Information Network), that aims to create an information network on research, diagnosis and treatment of neurometabolic diseases (iNMDs), addressed to patients and their families and in the DEEP (DEferiprone Evaluation in Paediatrics) project aimed at ), aimed to study deferiprone in children affected by congenital anaemias requiring chronic transfusion therapy and iron chelation, such as the β-thalassaemia major and the Sickle Cell Disease (SCD) and develop a new formulation suitable for children.
The main contribution of the Gianni Benzi Foundation in the field of rare diseases and orphan drugs, is represented by EuOrphan, a free and regularly updated database containing information on medicines for patients affected by rare diseases designated and marketed by both the European Medicines Agency (EMA) and the Food and Drug Administration (FDA). EuOrphan has a user-friendly interface allowing easy access to all information to healthcare professionals, researchers, companies as well as to patients and their associations.
The Gianni Benzi Foundation joins this event becoming a friend of Rare Disease Day and showing its support on its official website.
For more information, please visit the official Rare Disease Day website.