There are over 6,000 rare diseases affecting over 300 million people globally, and more than 90% of patients lack a viable treatment option. Diagnosing, treating and managing these complex and unpredictable conditions can be challenging for providers.

Today, forward-looking biopharma companies are developing digital solutions for rare diseases to help providers and patients diagnose, treat and manage rare diseases.

Our customers in rare diseases:

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Challenges along the patient journey

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Diagnosis

Because the conditions are so uncommon, providers often lack experience diagnosing patients with a rare disease. That means the road to diagnosis can be long—and frustrating. Patients may go years before receiving a diagnosis and getting the care they need.

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Dose management & adherence

Depending on the disease, there can be quite a bit of trial and error to find the right treatment and dial in the right dose. Then, once it’s identified, patient adherence to their drug regimen is paramount—and not guaranteed.

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Disease management

Rare diseases are often lifelong chronic conditions that require complex and personalized treatments, as well as lifestyle modifications. And patients managing rare diseases often face geographic barriers to accessing care from providers who specialize in their condition.

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CSL Behring’s patient population includes patients with rare and serious diseases. Many of our patients’ therapies are administered subcutaneously, requiring patients to take a very active role in administering and tracking their infusions. Improving treatment experiences through digital technology has been a focus for CSL Behring and is even more critical now during the ongoing global COVID-19 pandemic.

- Brian Johnson, Senior Director, Customer Engagement Management, CSL Behring

BrightInsight's integrated digital solutions can unlock better care in rare diseases

Faster patient diagnosis
Powerful algorithms hosted on the BrightInsight Platform give providers the insights they need to diagnose patients more quickly and accurately and match them with the right therapy as soon as possible.

Fine-tuned treatment and dosing recommendations
Treatment selection algorithms can leverage vast patient- and population-level data sets to provide instant recommendations. And digital tools like dosing calculators can help prescribing physicians tailor treatments to maximize the therapeutic benefits.

App-powered patient adherence
We quickly and easily stand up patient-facing apps that help patients track symptoms and quality of life, keep track of medications, share information with their providers and schedule care when they need it.

Comprehensive disease management
The combination of a patient app and a robust clinician portal gives providers the valuable data they need to better manage a patient’s conditions. Secure communication enables collaboration with other members of the care team.

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CASE STUDY:
CSL Behring Launches Digital Health Solution to Improve Treatment Experiences for Patients with Rare Diseases

Read how CSL Behring’s partnered with BrightInsight to launch an app for adult patients taking Hizentra for rare autoimmune disorders.

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