Passionate about rare disease advocacy, Liam McCarthy discusses the ways he is showing up for his community and striving to effect positive change. His work represents the power of young voices and shows that advocacy, in any form, has the power to truly connect and make a difference

My name is Liam McCarthy. I am a 21-year-old who is finishing up my last semester of college, and I was born with a rare disease called classic congenital adrenal hyperplasia. This means I do not produce the hormone cortisol and I salt really quickly. Nonetheless, even with this condition, I am able to live my life just like anyone who does not have a rare disease.

But just because I can live my life like everyone else, it doesn’t mean I am not passionate about rare disease advocacy. Ever since the beginning of college, I have been involved in this space whether it’s through national instances such as working with the FDA as a board member on their Clinical Trial Transformation Initiative, or more international instances such as being selected as a youth leader for Rare Diseases International. I consider myself highly involved in this space and want to continue to be.

This past year, I was selected as the North American representative for the international event: Raising Youth Voices, which was a joint effort between EURORDIS, Rare Diseases International, and the National Organization of Rare Disorders, in honour of Rare Disease Day 2026. The event itself is a newly designed initiative to ensure that the youth globally are involved in conversations that will help define the next generation of policy, research, support and care for rare diseases. And this year, just like the name of the event suggests, myself, along with five others, each from a different continental region, were given the opportunity to share our individual campaigns, our lived experiences and our passion on a global stage in Barcelona on 4^th February.

While the event itself was a one-day event (and a huge success!), the preparation goes back months for all of us. Each of us had to propose a campaign/proposition to be selected as one of the regional representatives. As I was most comfortable with social media, due to prior success in building communities on the platforms, I proposed a campaign called ‘The 100 Project’. This was a social media campaign on TikTok where for 100 days, I would share someone’s face and their story. This meant that by the end of my campaign, which started on 20^th November and ended on Rare Disease Day, it would total up to be 100 days, 100 faces, 100 stories. My selection criteria were simple: you just had to be part of the rare disease community in some shape or form, and where you lived did not matter. So perhaps you worked as a researcher, a doctor, a patient, or a caregiver—all of these would qualify. This was due to the fact that rare diseases, are well, rare, so I knew it would be unrealistic to find 100 people with rare diseases. In the end, I was able to get around 35-40 people with rare diseases and the rest were involved in some other way.

All of them, however, did have to follow one condition I set for the campaign, which was that I didn’t actually want people sharing their rare disease association, or even hint at it. There were a few reasons for this. One, it kept the one connection everyone shared a secret which I revealed on Rare Disease Day. Two, it meant people on TikTok would come back to find out what the connection ended up being. And three, which is also the most important reason, I wanted people to share who they are outside of their rare disease identity. In the end, the campaign achieved around 800 follows, 145,000 views, and 7.1k likes.

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LinkedIn: Liam McCarthy