International Conference on Rare Diseases and Orphan Drugs in Athens

At February 29 and March 1, 2024 will take place in Technopolis City of Athens, at the «Miltiadis Evert» Amphitheater, the international conference Rare Diseases Greece 2024, dedicated to Rare Diseases and Orphan Drugs.

The conference is organized by Rare Diseases Greece (RDG) and the BOUSSIAS Events, with the participation of patient representatives, healthcare professionals, researchers, policy makers, and representatives of the pharmaceutical industry.

Following the success of previous events, which featured dozens of speakers and hundreds of participants from many countries, this year's meeting aims to continue the dialogue surrounding the most significant challenges facing people with rare diseases.

From diagnosis to treatment access

The central theme of this year's conference is:

«Navigating the Unknown: Progress, Partnerships, and Hope in Rare Diseases»

The goal is to bring together in the same space the diverse people and organizations involved in the care and research of rare diseases: patient representatives, policy makers, clinicians, researchers, pharmaceutical companies, and regulatory authorities.

Among the topics to be discussed is early and timely diagnosis, access to available therapies, the quality of life of patients, the development of new therapeutic approaches, and the need for a more organized national strategy for rare diseases.

Particular emphasis is also expected to be given to European developments, as well as to the shaping of the new National Action Plan for Rare Diseases.

Day 1 – The Greek reality for Rare Diseases

The first day of the conference will be held in Greek, with simultaneous interpretation into English, and will focus on the needs of people living with rare diseases in Greece.

Among the speakers, representatives of the political leadership, the scientific community, patient organizations, and other bodies active in the field of rare diseases have been announced.

The main topic of the day will be development and implementation of the National Action Plan for Rare Diseases, but also the practical problems currently faced by patients and their families.

Day 2 – International developments and innovation

The second day will focus on international developments around rare diseases and orphan drugs.

Executives from European organizations and bodies are participating in the program, including representatives from European Medicines Agency (EMA), of European Joint Programme on Rare Diseases (EJP RD) and other organizations active in research, health policy, and the assessment of new therapies.

The discussions will focus, among other things, on new technologies, new financing models and regulatory changes that can impact the development of and access to treatments for rare conditions.

Why does such a conference matter?;

Rare diseases may be rare individually, but collectively they concern millions of people in Europe and globally.

For many families, the journey to a diagnosis remains difficult and time-consuming. Even after diagnosis, there are often significant challenges, such as access to specialized care, a lack of available treatments, and limited information.

Bringing together patient representatives, doctors, researchers, health authorities, and pharmaceutical companies in the same space can contribute to the creation of new collaborations and a better understanding of the real needs of people living with a rare condition.

For a community like that of Kleefstra syndrome, developments in the broader field of rare diseases are of particular importance, as issues such as early diagnosis, specialized monitoring, research, and access to new therapeutic approaches directly concern our own families as well.