Rare Disease Day 2023

Today is World Rare Disease Day. Let's look at some characteristics...

• Rare diseases currently affect 3.5% to 5.9% of the global population at some point in their lives, which is approximately 300 million people worldwide living with a Rare Disease
• In Greece are sick approximately 350,000 to 600,000 of our fellow human beings and over 30 million people in Europe.
• The 72% is of a genetic nature, while the rest are the result of infections, allergies, or environmental causes.
• Of these, 50% affects children, with 30% of these children dying by the age of 5.
• Almost it 50% of patients with Rare Diseases is undiagnosed, or remain for years with incorrect diagnoses, living a prolonged «Diagnostic Odyssey,» which can last from 5 to 30 years, if not their entire lives.

Maybe they're not so rare after all...

This year, for yet another year, the event is being held in a hybrid format 3rd International Conference on Rare Diseases: Greek Branch, on February 28, 2023, at Technopolis of the Municipality of Athens, and online on March 1, 2023, organized by the Association of Patients with Rare Diseases in Greece, the Association 95, Greek Alliance for Patients with Rare Diseases and the BOUSSIAS, with the aim of bringing together all stakeholders currently shaping the landscape of rare diseases, with the ultimate goal of highlighting the urgent need to develop and implement a National Action Plan for Rare Diseases by 2023.

The goal of the conference, which is held under the auspices of the European Organization for Rare Diseases (EURORDIS), to facilitate the exchange of valuable knowledge that will strengthen the dialogue and promote a comprehensive strategy aimed at ensuring equal opportunities for all people with rare, as well as the sustainability of the healthcare system, so that the unmet needs of patients with rare diseases can be addressed.

Everyone's participation is valuable, which is why you can still register here: https://www.rarediseases-conference.com/

The text by our beloved Elina Miaouli, founder of World of Rare Diseases (spanios.gr), which is one of the first, if not the first, to begin providing information and raising awareness about rare diseases.

Source: Association of Patients with Rare Diseases in Greece – Rare Diseases Greece