February 28, 2015 marks the eighth international Rare Disease Day, coordinated by EURORDIS, aiming to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The Rare Disease Day campaign, which takes place on the last day of February each year, puts rare diseases in the spotlight and brings people and patient organizations together to form a unified voice to advocate for the treatments, care, resources and services needed for patients with rare diseases.
A rare disease, also referred to as an orphan disease, is any disorder affecting a small percentage of the population. In Europe, a rare disease or disorder is defined as one affecting fewer than one in 2000 people; in the US, it is defined as one that affects fewer than 200,00 Americans at any given time. Over 6,000 rare diseases exist and are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease, but also from patient to patient suffering from the same disease.
Since many rare diseases have common symptoms, many patients are misdiagnosed, resulting in delayed treatment. A lack of existing scientific knowledge and quality information on rare diseases also often lead to misdiagnosis and delayed treatment. Additionally, several patients have difficulty in accessing treatment and care, resulting in social and financial burdens.
Although many challenges exist for patients and families of rare diseases, significant progress is being made every day. Important gains continue to be made with the increase of international cooperation in clinical and scientific research, as well as the sharing of scientific knowledge about all rare diseases. These advances have led to the development of new diagnostic and therapeutic procedures.
Thousands of patient groups and others worldwide are preparing events to raise awareness for rare diseases and the millions affected by them.
In honor of Rare Disease Day, show your solidarity with rare disease patients by raising and joining hands!
For more information on events in your area or how you can get involved visit: http://www.rarediseaseday.org.