By Emma Jolly, Director of Client Partnership, and Chris Russell, Senior Associate Director, Omnichannel Strategy
With so many channels and social platforms, teens are seeing all sorts of media, information, and often very misleading ‘information’. Searching for genuine and safe information they can relate to about their rare disease is a massive challenge. They are convincingly served up uncontrolled, unverified, and often peer-to-peer information – information that can also be picked up by AI and used as the basis for answers to rare disease questions from young people. It is vital that more is done to provide accurate, safe, and teen-centric information, in the spaces and channels they are existing in, and to act as a supply of verified information to supply AI-based queries. So, how can we help drive change?
Better understand their world: We need to dive into it, their platforms and channels, and SEE the conversations. YouTube, TikTok, Instagram, Snapchat, Reddit, Discord, Roblox, and Tumblr, to name a few. Get to know these environments before just creating content that we (adult brains) think will be of use.
Truly understand what they might want to know: Have we actually had conversations with teens about where and how they find their info? I suggest that’s the best way to make a start. Provide genuine value for them, rather than broadcasting at them. Support and facilitate their self-expression.
Micro or macro interactions matter: The channels we use don’t necessarily matter. The key is to capture attention by optimising the attention hierarchies of existing channels. Micro-interactions (like swiping or scrolling) and other techniques, like gamification, can help achieve active consumption. Short clips or podcasts are easily digestible and contain a delectable mixture of entertainment, information, and connections, all in one place. Content with audiovisual elements also helps bring a viewer in.
Keeping it real
The rare disease narratives on social media are just that: projected narrative descriptions of someone’s experience of a rare disease. But this can offer unique insights into lived experiences, provide an outlet for expression in our digital-heavy world, and help build a virtual community with others affected by the rare condition.[1]
The approach has to be both omnichannel and optichannel. We need to target different platforms, both online and offline, in an interactive and hybrid fashion, open-sourcing omnichannel and carving out subcultures. But we also need to be precise in how we do this to be truly meaningful for a teen audience. We should look at segmenting young people not by their disease, but by their emotional state. We could use less traditional means of stratifying young people to understand their emotions, behaviours, needs, and preferred modes of interaction.
By co-designing experiential learning experiences, using attention-grabbing micro-interactions like scrolling and swiping, and creating subcultures within existing platforms where genuine expression is encouraged, we can help reach many more young people with rare diseases.
And at the end of the day, information needs to be accurate. It needs to be credible. Language needs to be trustworthy. Sources need to be varied.[2] And what we say needs to be interpretable by the audiences we are speaking to. We can’t stop the flood of misinformation, but we can create safe spaces for young people to talk about rare diseases and get the right information and support they need in a way that brings them in, without making them beholden to heavy regulation that pushes them out.
What we must not assume is that young people want to be reached. Maybe they want to be invited into a world that they know will welcome them.
References
[1] Park HJ, Scott CJ, Smith HS, et al. Rare disease narratives on social media: A content analysis. Genet Med Open. 2025;3:102844.
[2] Litzkendorf S, Frank M, Babac A, et al. Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study. BMC Public Health. 2020;20(1):860.