The idea of Rare Disease Day started in 2008. It has since played a critical role in the development of a global community of persons living with rare illnesses that is multi-disease, global, and diverse but united in purpose.
Rare Diseases: An Exhausting Condition
Medical experts have identified over 6000 unusual illnesses by various anomalies and symptoms. These indications vary across diseases and between individuals who share a diagnosis. Relatively frequent symptoms may hide the existence of rare underlying disorders, resulting in misdiagnosis and treatment delays.
The condition is typically debilitating. It impacts the patient’s quality of life by the lack or loss of autonomy caused by the disorder’s chronic, progressive, degenerative, and eventually fatal character. Effective medications are often unavailable, which adds to patients’ and families’ anguish and suffering.
Rare Disease Day: Creating Awareness
The last day of February (28 February in normal years and 29 February in leap years) is the commemoration day for rare diseases. EURORDIS founded and coordinated Rare Disease Day in collaboration with 65+ patient organisation partners around the nation.
Rare Disease Day acts as a catalyst and focal point for advocacy actions at the local, national, and international levels. It raises awareness of the 300 million individuals worldwide who live with a rare disease, their families, and their careers. The campaign’s long-term objective is to guarantee equitable access to diagnosis, treatment, health and social care, and opportunities for persons living with rare illnesses.
While Rare Disease Day is a patient-led event, everyone may raise awareness and take action for this vulnerable population. The volunteers can be individuals, families, caregivers, healthcare professionals, researchers, clinicians, legislators, and industry representatives.
Significant progress is being made through collaborative international advocacy for universal health coverage (UHC), one of the United Nations’ Sustainable Development Goals (SDGs). It promotes equitable health systems that meet the needs of people living with rare diseases and ensure no one is left behind.
Rare Disease Day is an opportunity to raise awareness as a human rights problem on a local, national, and global level to create a more inclusive society.
Rare Disease Day is an excellent illustration of how progress may be accomplished, with activities taking place all around the globe on this day every year. Since its inception in 2008, when just 18 countries took part, this day become an annual event, with activities taking place in more than 100 countries in 2019.
Ketto is an online crowdfunding platform that can help rare disease-affected individuals and families raise funds for their treatment. Visit here to know more.