Rare Disease Day serves as a platform for uniting patients, families, caregivers, and medical professionals to raise awareness and support for patients with rare diseases. Many rare diseases are misunderstood, leading to challenges in diagnosis and treatment. Advocacy and collaboration are crucial in making a difference in the lives of those affected.
Rare Disease Day , observed globally on the last day of February each year, serves as an essential platform for uniting patients, their families, caregivers, medical professionals , researchers, policymakers and the broader community. This day is dedicated to raising awareness and support for patients with rare diseases, who frequently face challenges in gaining recognition and representation. Through advocacy, education, and collaboration, we can make a significant difference in their lives.
A disease is defined as ’rare’ when it affects fewer than 1 in 2 000 people. Rare diseases are often misunderstood, with some patients spending up to 10 years waiting for an accurate diagnosis. “Rare diseases might be individual in nature, but collectively they represent a significant portion of our population that cannot be overlooked,” said Kelly du Plessis, founder and CEO of patient advocacy group, Rare Diseases SA. “There are more than 4.1 million people in South Africa living with a rare disease, yet many of them, as well as their families, are often left coping alone and in silence
Rare Disease Day Patients Families Caregivers Medical Professionals Awareness Support Diagnosis Treatment Advocacy Collaboration