Ida – Beyond Stigma

Ida – Beyond Stigma

How Ida Brother’s Story Inspired Her to Advocate for People Living with Rare Diseases.

For Ida, it all began with her brother Karlo, who lives with neurofibromatosis type 1 (NF1). Growing up alongside him meant discovering early on the challenges faced by people living with rare diseases, as well as the weight of society’s judgment.

Over the years, this family experience became the starting point for her personal commitment to advocacy.

Today, Ida Mirković Knaus, from Croatia, is part of the RDI Youth Leadership Programme, which brings together young advocates from the global rare disease community. Her ambition is to help build a society where no one is excluded, overlooked, or denied access to healthcare because of their condition.

Giving a Voice to Those Who Go Unheard

“We forget that there are people outside who aren’t even in the room because they are too ashamed to enter. […] Our duty, if we want universal health coverage, is to go out, find those people, and bring them back into the healthcare system.”

— Ida, youth advocate and RDI Youth Leadership Programme member— Ida, RDI Youth Leadership Programme participant

At the heart of Ida’s story lies a powerful conviction: some people remain invisible, not because they have nothing to say, but because shame, fear of judgment, and stigma prevent their voices from being heard.

For Ida, advocating for healthcare that is accessible to everyone also means reaching out to these individuals, listening to their experiences, and ensuring they have a place in the conversation.

Her story reminds us that the fight for people living with rare diseases does not take place only in laboratories or institutions. It also begins within families, through human connections, and in the way we see and treat one another.

Discover Her Story

Through this intimate portrait, produced by the Fondation Ipsen in collaboration with Rare Diseases International, discover how a sister’s love for her brother became a driving force for advocacy and change.

A film about family bonds, dignity, and the courage to amplify voices that too often go unheard.