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Rare Diseases Day 2018


Despite the excitement for the creation of the Li Weibo Institute for Rare Disease Research in 2017, improper marketing, low publicity, and lack of exposure left the institute’s digital presence lacking. Organic search rank was not optimal, a poorly designed website left visitors with no information, and a lack of social media accounts did not allow community members to engage with the institute. The Institute was simply not getting the exposure it needed. 

The challenge that the Institute faced was how to generate exposure for the research, investigators, therapeutic approaches and strategies, and breakthroughs, to raise awareness and improve the digital presence.

The Digital Marketing Team quickly realized that the launch of a new website and other digital channels was important. Additionally, with Rare Disease Day (a day that brings awareness and support to all people effected by rare disease) upcoming, the team needed to finish the rebuild. 


When evaluating the challenges of the Li Weibo Institute for Rare Disease Research Website, the Digital Marketing team quickly noticed that the website needed a complete overhaul. Over the course of a few weeks, the team worked to create a dynamic website that included a user-friendly homepage, pages for each disease, a section highlighting latest news, and a blog page that gave researchers the opportunity to write stories about themselves and their research.

Once the website was redesigned, the next step for increasing exposure for the Institute was to create social media accounts. The creation of Facebook, Twitter, Instagram, and LinkedIn allowed audience members on all platforms to engage with new content and initiatives that the Institute had to offer. Posts were then added to each account to start to engage with the community, prior to Rare Disease Day.

The final step in order to increase visibility for the institution was to do so within the UMass Community. The team met with many of the researchers from UMass Medical School and the Institute to educated them about Rare Disease Day, take photos for social media content, and create buzz around the institute. 

Results and Takeaways

As a result of the Digital Marketing Team’s work, our efforts on Rare Disease Day resulted in a 2,100% increase in average website traffic as traffic had increased from 44 visits a week to over 900. We also saw an increase in traffic from social media accounts, meaning, the posting on Twitter, Facebook, Instagram, and LinkedIn had now become a top source for visitors to come from.

On social media, we established a strong social media presence and immediately saw an increase of 280 followers across all accounts, 325 post likes, and 212 post interactions, meaning our audience was eager for ways to connect and learn more about the Institute, it’s investigators, and their research. We also saw engagements from influencer accounts for Huntington’s Disease, Fragile X Syndrome, and CDKL5.

As a result of our marketing efforts and strategy, our content reached people in over 30 countries, resulting in 1438 link clicks and 1992 website visits.