Illuminating the Light on the Rare Disease Community

Rare diseases have historically been overlooked by the medical community. This class of conditions encompasses over 7,000 distinct disorders, and while each individual disease may be uncommon, collectively they have a profound impact on the lives of more than 400 million people worldwide. But despite this significant and far-reaching impact, the lack of research and treatment options prolongs the journey to diagnosis for these patients and leads to suboptimal outcomes. A study by the European Organisation for Rare Diseases found that as many as 25% of patients endure a wait of 5 to 30 years from the first sign of their symptoms to receive a diagnosis, with 40% initially receiving multiple misdiagnoses, leading to ineffective and unnecessary medical interventions. Additionally, … Continue reading Illuminating the Light on the Rare Disease Community