Yamina’s Life shares patients’ voices at the Fondation Ipsen and Science webinar

Organized in partnership with Science magazine, the “Redefining Connection” webinar gave Yamina Hsaini, content creator and advocate for patients living with rare diseases, the opportunity to share her journey and her commitment to raising awareness and giving a voice to young people affected by these conditions.

Giving a Voice to the Invisible

My name is Yamina Hsaini. I am a French content creator, known online as “Yamina’s Life,” and I live with rare diseases. For several years, I have shared my daily life and personal journey on social media to raise awareness of rare diseases and give a voice to the invisible.

In May 2025, I had the incredible opportunity to travel to Washington, D.C., to participate in a webinar organized by the Ipsen Foundation and Science, titled “Redefining Connection: How young people are shaping the future of the rare disease community through technology and innovation.” The webinar highlighted the role of young people in shaping the future of the rare disease community and how technology and innovation are transforming the ways we connect and support one another.

Three people are sitting at a desk, filming a webinar

Filming at the National Press Club in Washington

I traveled alone from Paris, and among all the participants, I was the only French person and the only one for whom English is not my first language. Naturally, I was a little nervous, but the journalist and other speakers quickly put me at ease.

The webinar took place at the National Press Club of Washington, located in the historic and iconic National Press Building. Stepping into this space felt surreal! Upon entering the recording studio, I was warmly welcomed. I met the other participants and was given a behind-the-scenes tour of the production: the studio, various rooms, including the control room… It was my first time in such a professional filming environment, and it was a fascinating experience!

When it was time to take my place on the set, I was prepared with everything I needed: earpiece, microphone, and notes in front of me. The recording began. Even though it wasn’t live, the program would be broadcast as if it were, which made the experience even more intense. I was nervous about making mistakes, but I think I did well! The journalist introduced each of us and asked questions in turn. I was able to discuss several aspects of my journey: the impact of raising awareness on social media, both the positives and the challenges, the importance of speaking about rare diseases, and my recognition as a 2025 laureate of the Black Pearl Awards by Eurordis.

Yamina is standing in front of filming monitors

“Participating in this experience gave me the certainty that our voices matter.”

The webinar lasted one hour, which didn’t allow time to go into all the details, and the language barrier limited some of my explanations. Nevertheless, the exchange between patients and professionals was extremely enriching! I left the webinar proud and happy to have represented patients on such a prestigious, international stage, especially after being used to speaking alone in front of a camera in my room. It was an unforgettable experience that gave me even more strength and determination to continue raising awareness.

I sincerely thank the Ipsen Foundation for their trust, for valuing the voices of patients, and for organizing such inspiring webinars. Participating in this experience gave me the certainty that our voices matter.