Science

Rare Disease Day: Here's Everything You Have To Know

By Cyril , Feb 28, 2017 01:13 AM EST

Experts have long considered Rare Disease Day as an annual event dedicated to elevating public understanding of rare diseases and calling attention to the special challenges they present to patients and families. That being said, Catalyst Pharmaceuticals, Inc., a renowned biopharmaceutical company that has been dedicated and focused on developing and commercializing innovative therapies for people with rare and debilitating diseases have recently announced that it has already made a partnership with 30 million Americans and health care advocates around the world in commemoration of the Rare Disease Day on February 28. Together with members of the rare disease community, ProQR Therapeutics N.V., another biopharmaceutical company dedicated to changing lives through the creation of transformative RNA medicines for the treatment of severe genetic rare diseases has also joined the said endeavor.

Significance Of Awareness

According to reports revealed by Globe News Wire, Catalyst allegedly continues to support patient organizations that provide disease awareness for diseases such as Lambert-Eaton Myasthenic Syndrome (LEMS) and Congenital Myasthenic Syndromes (CMS). Experts say thar these are rare diseases in which patients are often misdiagnosed with other diseases prior to getting a definitive diagnosis. Thus, it is believed that educating the patient and physicians at medical congresses is an important outreach to the rare disease community to facilitate proper and prompt diagnoses.

Meanwhile, in one of his statements reported by EIN News Desk, Daniel A. de Boer, Chief Executive Officer of ProQR has claimed that it is the company's mission to make a meaningful impact on the lives of patients that suffer from severe genetic rare diseases. As a matter of fact, he continues to explain that they are honored to be part of this event on Rare Disease Day to raise awareness and emphasize the importance of research. Mr. de Boer adds that together with their partners at the Leiden Bio Science Park along with many others around the world we are inspired by the stories of people affected by rare diseases and hope many more will join us in our quest to find treatments for all of them.

Rare Disease Day

On the other hand, as per the National Institutes of Health (NIH), it was found that a disease is rare if it affects fewer than 200,000 people. It was estimated that nearly 1 in 10 Americans live with a rare disease, which affects 30 million people and it was said that nearly half of these patients are children. Ultimately, Rare Disease Day takes place every year on the last day of February (February 28 or 29 in a leap year) the rarest date on the calendar which is also believed to underscore the nature of rare diseases and what patients face.

              

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