Did you know that rare diseases affect approximately 3.5% to 5.9% of the world’s population? That might not seem like a lot, but that actually equates to roughly 300 million people. Over 7,000 rare diseases are characterized by a broad array of disorders and symptoms that vary from disease to disease and from patient to patient. Often, common symptoms can hide underlying rare diseases, which often causes misdiagnosis and a delay in treatment. This February 29th, The Myocarditis Foundation will be celebrating Rare Disease Day in Sugar Land, Texas in order to raise awareness for individuals diagnosed with a rare disease, as well as their families and caregivers.
While most rare diseases are genetic, others can be the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 70% of rare diseases start during childhood. Myocarditis, for example, is one of the more prevalent rare diseases that can affect anyone at any age, however, it disproportionately impacts young, active healthy males. In fact, Myocarditis is actually the third leading cause of Sudden Death in children and young adults. While Myocarditis is technically classified as a rare disease, Myocarditis is actually far more common than most other rare diseases.
Due to the severity of many rare diseases, early diagnosis, as well as timely and adequate treatment are incredibly important. Unfortunately, however, the lack of scientific knowledge, and quality information regarding specific rare diseases often results in a delay in diagnosis and appropriate treatment. Additionally, the need for appropriate healthcare perpetuates inequalities and other challenges in access to treatment and care. This can often result in heavy social and financial burdens on patients and families.
This February 29th, Rare Disease Day will raise awareness for individuals diagnosed with rare diseases, their families, and caregivers. According to their website, the long-term goal of Rare Disease Day is to “achieve equitable access to diagnosis, treatment, health and social care, and social opportunity for people affected by a rare disease.” This year, The Myocarditis Foundation will be participating in Rare Disease Day on February 29th at Sugar Land Town Square in Sugar Land, Texas in order to help achieve these goals.
This year, we invite you to join us to participate in this excellent event. Guests will have the opportunity to enjoy music, participate in fun games, and network with other patients with rare diseases, their families, care givers, and stakeholders. For more information on attending this event, visit this link!