Diagnosing the condition that they suffer from is often a critical component for those living with a rare disorder
Can you imagine experiencing a wide range of physical and mental symptoms–including uncontrollable muscle spasms and cramps, seizures, fatigue, anxiety and depression–but not knowing the cause? Unfortunately, that may be the case for many people whose parathyroid glands are absent or damaged. Hypoparathyroidism (also called hypoPARA) affects many different parts of the body, which makes it complicated for a doctor to diagnose and manage it. The disorder is also rare, affecting an estimated 65,000 Americans.
Siren Interactive recently collaborated with NPS Pharmaceuticals, Inc., a specialty pharmaceutical company developing innovative therapeutics for rare gastrointestinal and endocrine disorders, on an educational website for patients and caregivers dealing with this rare and complex disorder. The website, Hypoparathyroidism.com, was created in conjunction with experts in the field as a resource to connect patients with hypoparathyroidism, their families and the healthcare professionals who treat them. The theme of the site, Hypoparathyroidism Answers, reflects this.
Accurate information is key
“The Hypoparathyroidism Association welcomes the launch of Hypoparathyroidism.com and believes it will be an important resource for our community of patients, as well as our caregivers,” said James Sanders, president of Hypoparathyroidism Association, Inc. “As a hypoparathyroidism patient, it is uplifting to see NPS’ recognition of our community needs and its dedication to providing accurate information about this rare disorder that is so often misunderstood.”
Hypoparathyroidism.com is also designed to meet the needs of healthcare professionals interested in knowing more about this rare disorder. It provides them with an overview of diagnosis and management, an animation explaining the mechanism of the disorder and links to peer-reviewed journal articles for in-depth exploration.
“Diagnosing the condition that they suffer from is often a critical component for those living with a rare disorder, especially for patients coping with symptoms that are uncommon and imply multiple organ systems,” said Francois Nader, MD, president and chief executive officer of NPS Pharmaceuticals. “As such, we are proud to launch Hypoparathyroidism.com, as our contribution to offering patients and healthcare providers a dedicated educational resource that focuses on the unique needs of the hypoparathyroidism community.”
As with many rare disorders, providing educational information and increasing awareness of hypoparathyroidism is essential to getting patients accurately diagnosed and treated.