Rare disease is not so rare. An estimated 300 million people worldwide are living with one of 6,000 recognized rare conditions.

Unfortunately, for these patients, their caregivers, and the healthcare professionals who serve them, there is no standard path to care. Each treatment plan is unique, requiring complex coordination across multiple stakeholders and systems.

While traditional, one-size-fits-all engagement models and tools are useful for common conditions, they fall short for healthcare providers (HCPs) who must coordinate complex rare disease journeys across multidisciplinary teams, maintain real-time visibility into patient progress, and manage the full continuum of care, from prior authorizations to long-term adherence.

This is why life sciences companies developing rare disease treatments need a next-gen CRM system. This integrated approach unifies all stakeholders through a 360° view, linking HCP engagement, patient insights, care team coordination, payer information and key account management, to better guide patients, providers, and partners through the lifelong challenges of rare disease management. This can help significantly improve access, adherence, and outcomes by addressing the unique challenges of rare conditions.

In this post, we explore five ways life sciences companies can evolve their CRM for rare diseases, and how next-gen data, AI, and automation can enable more connected, engaging, and effective experiences across critical touchpoints in the patient journey.

1. Enabling new healthcare models and services

One of the most important roles of a next-gen CRM is enabling new care models tailored to the unique demands of rare diseases. By tracking patient outcomes and linking treatment effectiveness directly to pricing, CRMs make value-based care, a critical model for rare diseases, both practical and scalable for payers and HCPs.

For example, in hemophilia treatment, a CRM can integrate wearable device data and infusion logs to monitor bleeding episodes in real time. This allows HCPs, payers and manufacturers to align reimbursement with actual reductions in episodes, ensuring payment is tied to therapeutic success while also giving physicians concrete data to support treatment decisions and patient counseling.

Next-gen CRMs also enable hyper-personalized treatments such as cell and gene therapy (CGT), which cater to smaller target populations.

For example, in CAR-T therapy for certain leukemias, the CRM can track all steps in the patient journey, such as cell collection and re-infusion. This information can be consolidated into live dashboards that offers physicians automated status updates and notifications to help inform and adapt the treatment plan based on patient progress.

2. Enhancing data orchestration for improved point of care

A next-generation, patient-centered CRM unifies disparate information, such as insurance verification and prior authorizations to prescriptions, shipments, and adherence tracking, into a single system, giving every approved stakeholder real-time visibility into the patient journey.

This enables healthcare providers to have access to the insights they need at the point of care to make faster, more informed decisions. For example, rather than navigating separate systems to manually review key information, HCPs can access consolidated views that help them better monitor progress, spot roadblocks, and deliver timely, targeted support when it matters most.

With predictive analytics layered in, connected data can flag potential issues, such as insurance coverage lapses or treatment disruptions, before they happen. For example, if an insurance policy is set to expire mid-treatment, the CRM system can automatically alert the patient’s care coordinator and trigger outreach to the insurer to help ensure uninterrupted access.

3. Connecting the patient journey

For HCPs, limited clinical evidence and few established protocols make treatment decisions difficult, especially when care spans multiple specialties and systems. This fragmentation forces providers to waste valuable time gathering data from disparate sources instead of focusing on patient care, leading to disconnected workflows and inefficient, costly coordination.

Next-generation CRMs change this. Built on a flexible, structured data model, they integrate both clinical and social data to deliver a 360-degree view of each patient. Configurable workflows adapt to the specific treatment protocol, while interoperability standards like HL7 and FHIR enable secure, seamless data exchange across systems and into physician workflows.

For example, in the case of spinal muscular atrophy (SMA), a next-gen CRM can integrate patient records, insurance approvals, and treatment scheduling to automatically alert care teams when prior authorizations are complete, trigger personalized education modules for caregivers, and remind HCPs of upcoming dose windows.

4. Personalizing interactions

Traditional CRM models work well for conditions with a uniform patient population and standard treatment path, such as flu or orthopedic cases. However, rare diseases are different.

HCPs must make individualized treatment decisions with limited clinical precedents, coordinating longer, more complex patient journeys that involve multiple stakeholders. Each case requires tailored interventions and can also involve highly personalized treatments, like CGT.

End-to-end CRM connectivity allows organizations to bring true real-time personalization to rare disease care. It serves as a connected system that can guide each stakeholder step-by-step, provide timely updates, and prompt decisions that move care forward.

For example, a next-gen CRM can aggregate EHR data, prescribing patterns, and prior patient outcomes to recommend personalized dosing protocols, follow-up schedules, and patient education resources for each physician’s unique patient mix. For patients receiving home-administered therapies, the CRM can tailor communication frequency, content format, and channel based on patient age and disease stage. It can also send caregivers instructional videos before each treatment cycle, real-time alerts for missed doses, and motivational messages tied to the patient’s progress milestones.

5. Educating stakeholders

Given the rapid evolution of rare disease treatments, HCPs face unique challenges staying current while managing diverse patient populations. A next-gen CRM can inform and personalize education campaigns and help disseminate them on each stakeholder’s preferred channel.

For example, for a gene therapy in hemophilia B, a next-gen CRM can automatically segment prescribers by their familiarity with the treatment, then deliver targeted micro-learning modules, dosing guides, and case studies via the provider’s preferred channel. It can also schedule follow-up virtual sessions, ensuring HCPs understand the therapy’s storage requirements, administration protocols, and patient eligibility criteria.

On the patient side, the CRM can trigger step-by-step video instructions, personalized reminders, or even live nurse or AI-assisted chat options for caregivers once the shipment is confirmed. Automated follow-ups can check understanding, flag potential errors in storage or preparation, and connect caregivers to a pharmacist if intervention is needed.

Building a rare disease/ therapeutic area (TA) specific next-gen CRM strategy with Capgemini

In our recent POV, A catalyst for commercial transformation in life sciences, our experts outlined four key questions to guide CRM platform decisions, one of them being: What is our current pipeline and future therapeutic area (TA) focus? The answer may define which CRM platform companies may choose.

Different TAs evolve at different speeds, especially when it comes to engagement models, and the CRM needs to match that pace. As rare disease care becomes personalized, next-gen CRMs will play a key role in helping companies develop and scale new treatments.

It’s time to reimagine CRM not just as a system of record, but as a catalyst for innovation, one that connects pharma companies, providers, patients, and all relevant stakeholders to anticipate patient needs, accelerate breakthroughs, and deliver better health outcomes.

Want to discuss how a next-gen CRM can help your company’s deliver the next level of care for rare diseases? Contact our experts to learn more about building and executing a therapeutic area specific CRM