Approximately 6,000 distinct and rare diseases affect more than 300 million people around the world. Almost 95 percent of rare diseases have no approved treatment.
At Sobi North America, we’re focused on changing that by delivering innovative treatments with a sense of urgency to improve the standard of care for patients living with rare and severe diseases. We are dedicated to ensuring that all patients have access to our medicines.
An estimated 75 percent of identified rare diseases affect children, often having a devastating effect on life expectancy and quality of life. Around 30 percent of children diagnosed with a rare disease will not live to see their fifth birthday. The severe nature of many rare diseases often leads to high levels of distress for patients and their families, with an accompanying high treatment burden.
The majority of rare diseases are inherited rather than acquired: they involve a defect in the genes that tell our bodies how to work. As a result, the body may fail to produce an essential enzyme or protein, for example, or its own immune defenses may attack its own systems.
At Sobi, we believe increased awareness and understanding about rare diseases and treatment options are vital in the fight against rare diseases. We are committed to providing the education and support patients and caregivers need to learn more about their conditions.
Many physicians may never have seen a specific rare condition before; as a result, many cases can go undiagnosed for years. Greater awareness and more available medicines mean the world is looking brighter every day for people suffering from rare and severe diseases.
Below is a list of resources to help patients and caregivers stay up to date with the latest information for the various diseases and conditions we treat.