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Honoring Rare Disease Day: Shedding Light on the Unseen Struggles Every year, on the last day of February, the world comes together to observe Rare Disease Day—a day dedicated to raising awareness about rare diseases and the challenges faced by those affected. Rare diseases, often referred to as orphan diseases, collectively impact millions globally, yet each individual condition is so rare that it may only affect a handful of people or even just one person in a given population. These diseases encompass a wide spectrum of conditions, from genetic disorders to autoimmune diseases, each presenting its own set of unique challenges. Despite their rarity, the collective impact of rare diseases is significant, with approximately 300 million people worldwide living with a rare disease. For those living with rare diseases, every day can be a battle. Misdiagnosis, lack of treatment options, and limited access to specialized care are just a few of the hurdles they face. Furthermore, the burden extends beyond the patients themselves, affecting their families, caregivers, and communities. Rare Disease Day serves as a platform to amplify the voices of those affected, advocating for greater awareness, research, and support. It fosters collaboration among patients, healthcare professionals, researchers, and policymakers to address the unmet needs of the rare disease community. In recent years, significant strides have been made in advancing research and treatment for rare diseases. Breakthroughs in genomic sequencing, precision medicine, and gene therapy offer hope for many who previously had few options. However, there is still much work to be done to ensure equitable access to these innovations for all those in need. As we commemorate Rare Disease Day, let us not only celebrate the resilience of those living with rare diseases but also reaffirm our commitment to creating a world where every individual, regardless of the rarity of their condition, has access to timely diagnosis, effective treatment, and compassionate care. Together, we can shine a light on the unseen struggles of the rare disease community and work towards a future where no disease is too rare to matter. #rarediseases #stem #academia

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Preethi Priyadharsini M S

Supporting Academic Leadership | Executive Assistant to the Pro VC at REVA University

10mo

Awesome mahalakshmi s

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