Enhancing Patient Services: Supporting Rare Diseases

The Challenge

A rare disease company was taking the typical approach of ensuring access to drugs for the patients who took its drugs. The HUB was well equipped to assign each patient a single patient care contact for access management, any additional calls and follow up. However, the more we engaged with patients the more we learned there was an opportunity to provide services beyond making sure medications were paid for. The challenge was to help company leadership appreciate the value of the added expense providing behavioral support services – serving the patient as a whole person, helping to manage issues that help patients manage their lives as a whole.

The Solution

We know that we learn a lot about the lives of patients, care givers, and their families as our relationships are so intimate when mananging rare diseases. We decided to harness those relationships and devise a solution that would serve both the traditional pharma leadership as well as progressives within the company who firmly supported serving patients in a more strategic manner that was better for patients in the end.

We developed a patient/caregiver advisory board for each therapeutic area. We worked with these boards the same way traditional pharma works with its boards – we asked what they need, learned more about their lives, and listened to their requests. We thought we were informed prior to the development of these boards but as we grew the relationship with these boards we got insights that went well beyond typical, one-time only, market research. And, we built even stronger long-term relationships.

Utilize Old Tools in a New Way

We Established a Way to Listen All the Time

Patients Served Globally

Advisory Board Participants

Advisory Boards Launched

Amazing Result: HUB serves patients better!

Just like a brand, we listened to our advisory boards. We learned:


This continual feedback enabled more routine updates to patient/HUB services

The HUB developed from only handlng the financials for patients. Iit was growing to support patients behaviorally.

Documented Behavior Change

We learned more about barriers to using our medications that went well beyond access. As we got better at supporting the whole patient we saw that behavioral changes were being made. These changes were documented through feedback gathered by the case managers. In the future this data may be backed up by a platform to collect patient reported outcomes (PROs)

Developed stronger traditional partnerships

Pharmaceutical companies focused on rare diseases quickly learn to have strong relationships with patients, caregivers, and families. As the HUB participants learned we were actually listening to their needs HCPs who paid little attention as they see these rare diseases so infrequently were now seeing the company as a partner and resource. Advocacy groups realized we could be a trusted partner beyond writing a check.

Internal business processes were streamlined.

As the advisory boards became active, the value gradually became clear to other parts of the organization.  Feedback from the boards was incorporated into both the brand planning and drug development process – saving time and money developing initiatives that would not be useful to patients as well as avoiding developing formulations that would not be useful to patients.  

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