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Building an awareness strategy for rare disease with CNETS March 17th, 2021

About the Organization:

“CNETS is a volunteer-led charity, and our small but mighty team makes an incredible impact in the lives of neuroendocrine cancer patients…” – Jackie Herman, Presidents of CNETS. 

The Canadian Neuroendocrine Tumour Society (CNETS) is the only charity that provides support and education for neuroendocrine cancer patients, their families, and caregivers, across Canada. 

CNETS also funds research grants and raises awareness of neuroendocrine cancers, particularly among their main stakeholders, with the goal of improving time to diagnosis. These key stakeholders include medical professionals, health & policy decision makers, researchers, and the general population.

The Challenge:

CNETS approached Endeavour for guidance on establishing a multi-channel communication strategy that would be measurable and impactful to their overall mission. Because the charity has multiple stakeholders with different goals and objectives, there was no one clear definition for “awareness” across all groups. The ability to measure success of the implemented programs was also critical for CNETS, as measurement has been a challenge in the past and would allow them to iterate and adjust their plan into the future.

According to Rachel Adams, Engagement Manager to the CNETS project:The ask for the project was to build an awareness strategy, with the primary challenge being the volume of stakeholders for whom “awareness” meant something different. It was critical to build a strategy that could be measured, adapted and shifted as needed to drive the right impact to each stakeholder group.”

High-level Approach:

Endeavour consultants began by conducting an audit around CNETS’ current awareness strategy, as well as their web and social media presence, to better understand how the charity stacked up against other rare disease organizations online.

They then divided CNETS’ key stakeholder groups using a weighted scoring model (built by the Endeavour team), with the aim of identifying the highest value segments where CNETS could build awareness and see the most value. This resulted in the creation of three prioritized stakeholder groups:

Tier 1: Specialists, Pharma Partners, Researchers 

Tier 2: Oncology Nurses, NETs patients, Surgeons 

Tier 3: General population, General practitioners 

Further evaluation, research and analysis was conducted, which validated the continuation of five awareness tactics that CNETS was already doing, such as hosting NET patient webinars and education sessions, participating in community fundraisers, building an ambassadorship with surgeon partners, and circulating an email newsletter. 

Six new potential awareness tactics were also developed and ranked based on based on tactics the Endeavour team determined would show measurable value in the short term:

High Priority Items

  • Research Keyword Strategy
  • Research Platform (Website)
  • Research Strategy (Social Media)
  • Specialist Collaboration & Webinar Series

Medium Priority Items 

  • Patient Ambassador Strategy
  • Surgeon Ambassador Program

To roll out these recommendations, the consultants suggested using three awareness committees: the Social Media Team, the Web Team, and a Specialist Team. Each committee would be given key activities and KPIs (key performance indicators) based on the current and new awareness tactics identified and in turn, increase engagement for the key stakeholders that were prioritized.


Jackie Herman, President of CNETS, was incredibly pleased with the project’s final recommendations. She remembers the team had initially kept their expectations in-check given their past experiences with other consulting organizations. However, they were thoroughly impressed with the initial Endeavour project vetting process, and had a strong engagement experience with the project’s Engagement Manager, Rachel Adams.  

Overall, the team was given a lot to consider for next steps, as the recommendations provided a solid foundation for strategy over the next several years. Since the completion of the project, CNETS’ Board of Directors met and discussed the recommendations in detail to decide what plans to pursue and implement first.

After working with the Endeavour team, Jackie notes: “Our experience was very positive. One of the aspects we appreciated the most was the “fact finding” the Endeavor team did to understand our cancer and the cancer space in general, including the very specific challenges faced by neuroendocrine cancer patients, which has a direct impact on the awareness strategy…”


The Canadian Neuroendocrine Tumour Society (CNETS) is a cancer charity based in Ontario and is a former client of Endeavour Consulting for Nonprofits. Read more about Endeavour’s pro bono services at: 

Written by: Lia Pizarro

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