top of page
  • Writer's pictureAventria Health Group

How to Foster a Groundswell to Activate Stakeholders and Increase Rare Disease Awareness

Looking for ways to increase disease state awareness to support enhanced patient outcome/experience? Foster a groundswell.


Situation Analysis

Raising awareness and interest in a disease area that is not top of mind is a common problem for the marketing of brands for rare diseases. If you don’t have the resources to run a large-scale TV campaign or hire 2000 more field reps, then you need a different approach.

This was the challenge faced by an Aventria client, who had a highly effective treatment for patients with a complication due to cirrhosis of the liver.

Research indicates that a wave of new cases of nonalcoholic chronic liver disease (CLD) and cirrhosis is approaching (Estes et al, 2018; Marchesini et al, 2003). In fact, the incidence of CLD is expected to triple by 2030, a lot of it driven by obesity and metabolic syndrome (Estes et al, 2018). SEER data from 2018 already indicate that the mortality in those aged 25 to 54 years due to CLD is greater than that of diabetes or stroke (Murphy et al, 2021).

Yet, awareness, management, and prevention of CLD complications among primary care physicians (PCPs) appear to be much lower than those of diabetes or cardiovascular disease.

In a recent trend report, 38% of survey respondents (gastroenterologists, hepatologists, hospital-based physicians, and PCPs) were unaware of or unable to name national guidelines for the management of CLD; and only 49% are using the American Association for the Study of Liver Diseases (AASLD) guidelines (Salix, 2021). Furthermore, there are no CLD quality measures in any of CMS’ value-based initiatives comparable to those for diabetes or cardiovascular disease.

Solution: Foster a Groundswell Movement

To raise awareness and generate a call to action for better management of CLD, we deployed a groundswell movement with our client. The crux of the CLD groundswell movement was to be a catalyst activating stakeholders in liver disease and championing improvements to CLD management—in effect, generating a groundswell of national attention.

The key elements for successful implementation were as follows:

  • Senior management support and a dedicated internal team guiding and tracking its implementation, including a champion (our client)

  • The Liver Health Annual Trends Report, researched and developed by Aventria, that identified gaps in guidelines-based care, issues in CLD management, benchmarking awareness, and the burden of illness

  • Leveraging the Trends Report to heighten awareness across key CLD thought leaders, advocacy groups, and associations. This is coupled with a public relations (PR) campaign utilizing Aventria’s hyper-targeted, nonpersonal messaging platform (RAMP-UP™).

  • Ongoing executive and PR outreach to stakeholders for further distribution of the report

  • Availability of presentation slides of the report’s findings for use by stakeholders in their presentations

The CLD groundswell movement was launched with the report in late 2021 and garnered tremendous interest from liver stakeholders who have also distributed the report, raised awareness of the issue, and launched their own initiatives.

Our client’s company is now viewed as a market leader and an impactful resource/collaborator in nonalcoholic CLD. Aventria is developing the next highly anticipated edition of the Liver Health Annual Trends Report. We foresee ongoing growth of the awareness of CLD management and continued momentum of the collaborative groundswell movement.

Interested in launching your own groundswell movement?

David Guy, SVP, Oncology and Specialty Product Markets, specializing in commercializing oncology and specialty products; was instrumental in the commercialization of Taxotere, Fludara, Herceptin, and Rituxan, at

Making a difference in patient care by helping patients, providers, and payers collaborate on shared priorities


Estes C, Razavi H, Loomba R, et al. Modeling the epidemic of nonalcoholic fatty liver disease demonstrates an exponential increase in burden of disease. Hepatology. 2018;67(1):123-133.

Marchesini G, Bugianesi E, Forlani G, et al. Nonalcoholic fatty liver, steatohepatitis, and the metabolic syndrome. Hepatology. 2003;37:917-923.

Murphy S, Xu J, Kochanek KD, et al. Deaths: final data for 2018. Natl Vital Stat Rep. 2021;69(13):1-83.

Salix Pharmaceuticals. Liver Health Annual Trends Report: Perspectives on the Changing Face of Chronic Liver Disease. 1st ed; 2021.


bottom of page