Hi everyone my name is Saida Mahoney and this is my story from myself attending and participating in Fall Advocacy Days. I had the incredible honor of attending Fall Advocacy Day with the Bleeding Council of California. I am still overflowing with gratitude and inspiration. As a patient living with rare diseases, this was more than an event  it was a powerful opportunity to raise awareness, amplify voices, and be a part of meaningful change.

Representing the rare disease community, I had the privilege of sharing my experiences, challenges, and perspectives as someone navigating complex medical conditions every day. Being able to participate as a patient advocate reminded me of how vital it is to speak up for those whose voices are often unheard, and how each story can contribute to shaping better healthcare policies, resources, and understanding.

What struck me most was the collective energy and dedication of everyone there  patients, advocates, caregivers, and medical professionals all working together to ensure that the needs of people with rare diseases are seen, heard, and valued.  Being surrounded by such passionate, compassionate individuals reinforced why advocacy matters, why community matters, and why our voices matter.

This experience also reminded me that advocacy is not just about policy  it’s about hope, empowerment, and representation. Every conversation, every testimony, and every interaction is a step toward a world where rare disease patients are not overlooked but supported, celebrated, and empowered.

I leave this event inspired, energized, and proud  I am proud to be part of a community that refuses to be invisible, proud to advocate for change  and proud to use my own voice to make a difference. 

To anyone out there navigating rare diseases, chronic conditions, or complex medical journeys: your story matters. Your voice matters. Your advocacy matters. Together, we are stronger, louder, and unstoppable.