Rare diseases pose unique challenges requiring problem solving and customized approaches to care. Touchpoint can help your healthcare professionals manage patients with diverse and complex needs.
While individually rare, rare diseases are collectively common. The US Orphan Drug Act has led to sharply increasing numbers of medications developed specifically for the treatment of rare diseases. At least 7000 rare diseases are documented, and each has its own diverse symptomatology. The clinical population of patients suffering from rare diseases is heterogeneous with diverse phenotypes and clinical courses. Patients arrive at a diagnosis after a lengthy process of evaluation, causing considerable psychological stress to both patients and their caregivers. The stress is augmented by confirmation of the diagnosis and must be addressed in treatment because patients with rare diseases may have a sharply reduced quality of life as well as limited life expectancy.
The management of patients with rare diseases demands of the clinician an ability to problem solve, in addition to specialized in-depth knowledge about the disease state. To manage patients with rare diseases successfully, physicians may need assistance with
- Providing continuity of care as patients with complex needs transition from pediatric to adult care
- Coordinating the contributions of many medical specialties such as neurology, gastroenterology, psychiatry, endocrinology, cardiology, and physical therapy to manage comorbidities
- Engaging parents and/or other caregivers of young patients with rare diseases in the management of the disease
- Integrating the knowledge patients derive from the internet, social media, and patient advocacy groups into their care plan
Touchpoint’s experts can assist with the highly complex task of caring for patients with rare diseases.
Our healthcare contact center can act as a resource for customized care solutions at the clinician’s disposal, and our healthcare commercialization teams are adept at meeting the unique, specialized needs of patients dealing with rare diseases as well as to the healthcare providers treating them.
Our medical science liaisons are available to provide in-depth scientific knowledge on individual disease states and treatments, and our clinical health educators are ready to help your customers and their staff develop care plans that meet the unique needs of patients with rare diseases.