Keeping it real: rare-disease and social media

By Kylie Youtz, Engagement Strategist, FCB Health New York and Jacqueline Cirelli, Social Media Strategist, FCB Health New York

For people of all kinds, especially the rare-disease community and their caregivers, the pandemic has contributed to a more significant focus on social media than ever before. When people could not connect with their doctor in person, they turned to social media as a source for answers to their health questions. They started depending on digital influencers and peers to feel connected in a time of isolation.1

Now that the pandemic has shaped a new era, there is an opportunity for healthcare marketers to use this increased engagement on social media to connect with people—but it is important to do this in a way that feels authentical and real. We know authenticity is the key to success on social media as it largely leads to trust and respect for brands, and when people trust brands they become loyal and more likely to recommend them. Here are a few ways to incorporate being authentic with a rare-disease audience.

Listen in

Social media listening is critical to finding a brand’s target audience, raising awareness about the brand, finding insights about the indication, tracking competitors and identifying areas of unmet need. Social listening enables marketers to tune in to peoples' conversations and discover what really impacts their lives—from diagnosis and treatment to side effects and emotional burden. Companies that are tuning into what is being said by their consumers can, in turn, provide solutions and show they are listening to their audience. For example, if multiple people are discussing the decline in their mental health on social media, the brand can listen and update their website with more resources to better serve their consumers’ immediate needs.

By utilizing the insights found through social listening, brands can innovate their messaging and strategy to meet consumers in a place where they are most receptive and feel as if they are being understood.

The proof is in the social

Now that the internet is omnipresent in everyone’s lives, people living with rare diseases aren’t going to their peers as much for word-of-mouth recommendations for doctors or medical needs; instead, they are starting to search for social proof online. People are looking for on-line reviews, testimonials and signs that they can trust a brand.

One big proponent of social proof is active presence and engagement on social media. When people are searching the internet for information, they want to ensure they can find non-biased information, something you cannot always find if you ask a peer or family member. Brands that have a multitude of likes, positive reviews, comments and posts with real engagement on their owned channels tend to be valued more in the customer’s eyes. And the greater the positive activity, the greater the social proof.

Another way to showcase social proof is by using Instagram and Facebook Live. For instance, holding a live Q&A Session with a doctor where people can interact in real-time can reveal authenticity in your brand.

The art of influencing

Most social media users are familiar with major influencers who have a wide reach across platforms like Instagram and TikTok. But more recently, pharma has joined this trend by engaging patient and caregiver influencers. Unlike your typical retail influencers, patient influencers don’t need millions of followers; they can be micro- or nano-influencers that have built a trusted community with high engagement or interactions.

When it comes to branded pharma products, a survey from WeGo showed a highly positive reception for patient influencers: 87% of respondents who are patients will ask their physician about a specific medication when information from pharma is shared by a patient influencer.2

Healthcare marketers can identify patient influencers who are currently on social platforms with a niche audience for their specific rare disease. Marketers can partner with influencers to drive home the authenticity of a campaign.

A real patient with a rare disease sharing their story or their caregiver sharing theirs can have a high impact on patients who feel as though they are alone in their struggle. These patients are looking for a person to relate to and in turn will value a brand more once they have been following the influencer’s journey.

Creative content: paid vs organic social

While there are still restrictions when it comes to pharma brands on social media, platforms are constantly creating more ways in which pharma can be active on social and do so creatively. Pharma strategy starts with deciding on organic vs paid social, and most brands decide to engage their audience in both ways.

Brands can choose to utilize organic social to establish personality and voice; build relationships by sharing informative, entertaining and inspiring content; engage customers at any stage of the buying journey; and support their customers with online customer service. Organic social provides the opportunity to be more personal with your audience as they are further down the funnel. It’s a potentially smaller but more valuable audience.

Organic social content should be authentic and current. For example, AbbVie introduced their “Impact Beyond Numbers” report to discuss the challenging times of COVID-19 and put more emphasis on financial assistance than ever before. This shows that the brand and company are thinking of what is happening in the world, and how they can connect with the audience about it.

Organic social can only reach your followers and who they share your brand's content with, but paid social can help cast a wider net to gain new followers and traction. Paid social is utilized to create brand awareness and attract new followers, generate leads and drive conversions. But how can we keep it authentic? Like organic posts, paid social posts should create a narrative that fosters a relationship with the audience. Think of using patient influencers and advocates as discussed earlier. This can create a sense of relatability and hopefully become a crucial point of recall for people.

In conclusion

As you are thinking of your next rare-disease social media campaign, keep in mind all the steps that are necessary to ensure it’s authentic. Listening to your audience is crucial to keep up in social media, as interactions and engagement are ever-changing. In addition to social listening, be aware of your social proof and how your presence online looks to your audience. If they can see online reviews and testimonials of your brand, they will feel confident in your brand. Finally, choose how you will engage with your audience. This could be through influencers who are going through the same emotions as your consumers. Patients are people first and we need to remember this for a successful campaign.


1 Rare disease marketing has become a family affair - Features (

2 Patient Influencers Driving Results for Pharma