Youth advocacy and the limits of social media-centred models
Estimated reading time: 5 minutes
In Barcelona recently, at theRare Disease Day Raising Youth Voicesevent, a group of young people involved in rare disease advocacy showcased their initiatives. Their energy was unmistakable, but what stood out was the concreteness of what they were doing.
Nearly all were working on digital campaigns, but most were also engaged in more traditional advocacy activities: making university campuses more accessible, organising sporting events for people living with invisible disabilities, setting up meetings between clinicians and medical students, creating social spaces for those experiencing isolation, adapting advocacy tools for local policymakers, and even raising funds to support the financing of a clinical trial.
These are not symbolic gestures. These interventions, rooted in communities and aimed at measurable change deserve recognition and should serve as examples of what meaningful youth advocacy can look like.
Discussing the event with colleagues and friends afterwards, I found myself thinking about how many stakeholders have become accustomed to associating youth advocacy with raising awareness online. Even within patient organisations, I have seen how easily this association results in a default strategy for asking young advocates to ‘do a social media campaign’ sometimes less out of conscious conviction than out of practical necessity. When time, resources or organisational bandwidth are limited, it can feel easier to amplify youth voices through social media campaigns than to meaningfully integrate younger generations into governance, strategic decision-making and long-term advocacy structures.
Left unchallenged, this approach reduces youth participation to symbolic visibility rather than tangible change.
Awareness is not the same as representation
To be clear, influencers are not inherently problematic. Social media plays an undeniable role in visibility, education and community building. Many individuals have helped to bring rare diseases into public consciousness through personal storytelling and online reach.
However, there are risks in accepting influencer culture as the primary model for youth advocacy.
Followers and likes are not the same as members of a patient organisation. Influencers, by definition, exhibit their own lives. Their perspectives may be valuable, but they are not structurally accountable, and there is often limited transparency regarding interests, incentives or representativeness.
Patient organisations, though imperfect, are built around the premise that they represent communities beyond a single individual. They have governance mechanisms, collective mandates and an obligation (at least in principle) to serve a broader demographic.
The danger is not that influencers exist, but that systems begin to elevate the “super advocate” at the expense of sustainable, community-anchored participation.
What we should be supporting instead are efforts that integrate young adults into existing advocacy infrastructure, innovating where necessary. Youth engagement should not be performative or peripheral.
A changing digital future for Generation Alpha
There is another reason this conversation is urgent.
Across Oceania, Europe and even in parts of America, real regulatory moves are underway to limit teenagers’ access to social media platforms, whether through age verification requirements, restrictions on algorithmic features, or even outright bans for younger adolescents. Even absent regulation, increased awareness of the downsides of social media and the toxic politicisation of many platforms is changing behaviour.
I am not a digital policy expert, but it does not require a great leap of imagination to consider that Generation Alpha, those growing up in this new environment, may engage online in fundamentally different ways than Generation Z, millennials or even Xers like me.
If marketers are already adapting by shifting towards closed-circle communities, messaging platforms and activity-based engagement, we should pay attention. The relationship between young people and mass social media platforms is becoming more fragmented and less predictable. If that is the case, then advocacy models that rely heavily on broad social media visibility will become less effective over time.
The future of awareness raising and systems change will depend more on authenticity and presence: presence in schools, in local communities, in policymaker forums and in real-world networks of support.
That sounds, to me, like the natural role of a patient organisation.
Even without changes to the social media landscape, these community-based engagement activities almost surely have a deeper impact than passively scrolling past content anyway.
Investing in the next generation means building with them
Youth advocacy is not a communications strategy. It is a long-term investment in the future leadership of patient movements.
The young people I met in Barcelona were not simply raising awareness. They were building access, inclusion, solidarity and policy relevance. They were doing the work.
If we want advocacy ecosystems to remain resilient in a shifting digital landscape, we should resist the temptation to reduce young engagement to hashtags and follower counts.
Instead, we should continue investing in patient organisations, supporting innovation within them, and creating space for young people to contribute in ways that are lasting and meaningful.
The next generation of advocates will shape the future in their own way, and we may not yet know what forms that will take. But ensuring that strong, accountable structures exist to support them feels like a sensible place to start.
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