Written by María Garrido, communications consultant, INDPR

My name is Maria. I was born and raised in Spain, spending my formative years in Fuenlabrada, a town outside of Madrid. I currently work as communications and coordinator consultant at the International Niemann-Pick Disease Alliance (INPDA) and the International Niemann-Pick Disease Registry (INPDR). But my journey is more than just my professional title, it is one that is embedded in the rare disease community from a deeply personal place—as the cousin of Raúl , a boy who changed my life forever.

Raúl was born with Niemann-Pick type C (NPC), a rare and devastating disease that affects the body’s ability to metabolise cholesterol and lipids. But to us, he was never defined by his diagnosis. Raúl was full of life—always smiling, always lighting up the room. He loved being surrounded by friends and family, and his energy was infectious. Music was one of his greatest passions; he knew every lyric to every song by Estopa, and you could often find him singing along with joy. He was a huge football fan, cheering for the Atleti team with unwavering enthusiasm, and he especially loved celebrating birthdays—the bigger, the better! His warmth, humour and love for life left a mark on everyone who knew him. Raúl wasn’t just my cousin—he was one of my favourite people, and his spirit continues to guide everything I do in this community.

It was through this volunteer work that I met John Lee Taggart, head of communications (then social media and communications officer) at Niemann-Pick UK, the INPDA, and the INPDR. He is also a screenwriter and director whose creative projects often blur the lines between advocacy and art, with a strong focus on the rare disease community. I first helped him by translating subtitles for his short film Go Make Memories (Carl Mason, 2019), and we quickly discovered a shared passion for storytelling and advocacy. Sadly, Raúl passed away four years ago. His absence is still felt every day, but his memory is what fuels my continued advocacy—and eventually led me into a full-time role supporting Niemann-Pick organisations on a professional level. John’s films like Invisible Manners (2021), A Rare Find (2023), and most recently Hadid and I (2025), bring rare disease stories out of the echo chamber and into public consciousness, creating space for understanding, empathy and action.

Hadid and I is a concept film that will eventually become part of a larger body of work titled A Rare Life. The story follows a bereaved husband who, after losing his wife to Niemann-Pick disease, tries to navigate the complexities of grief while raising their young daughter. Along the way, he finds support in the most unexpected of friendships, with moments of humour woven through the heartache. While the film tackles heavy themes of loss and resilience, it does so with a surprising lightness—a deliberate choice to ensure the story connects not only with the rare disease community but also with a wider audience, highlighting the universal threads of love, family, and hope.

From early on, John involved me in the development process. He asked for my input to ensure the depiction of patient experience was authentic and respectful, and he also invited me to join the production team as an assistant — alongside other members of the rare disease community. The aim was ambitious: to break out of our usual advocacy channels and reach a broader audience, using a blend of comedy and drama to foster empathy, connection, and awareness.

The result was incredibly rewarding. Hadid and I premiered at the Sunderland Shorts Film Festival—a BIFA-qualifying event—where it received strong coverage, including a feature on BBC News. Even more exciting was the Audience Choice Award it won at the festival. This recognition means so much because it confirms that a story rooted in the rare disease world can resonate beyond it—and even compete among mainstream productions.

This experience has reminded me why advocacy is so important to me. It’s not only about pushing for change in policy or medicine—though that matters deeply but also about changing hearts and minds. It’s about reaching people who might otherwise never hear these stories and making them care. That’s what Raúl taught me, and that’s what Hadid and I tries to achieve.

The film will continue its festival run through 2025, with the last stop being the Smiley Charity Film Awards 2026, the largest “cause based” film event in the world. A public release is planned for November 2025 and I cannot wait for more people to experience the story we’ve worked so hard to tell!

Because Hadid and I isn’t just a film—it’s a reminder that every story, no matter how rare, deserves to be seen and heard.

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