Blog post #2 - Why I Founded Rare Living: A Message From Our President

When Rare Living was first envisioned, it wasn’t just creating an organization, I was creating the support system and resources I desperately needed and couldn’t find.

Living with rare diseases means navigating a healthcare system that wasn’t designed with people like us in mind. It means being misdiagnosed, overlooked, and dismissed. It means sitting in waiting rooms, emergency rooms, and specialists' offices trying to explain what you’re feeling to people who may never have heard of your condition, and who often don’t care. It means being exhausted, not just from symptoms, but from fighting every step of the way to be seen, heard, and believed.

Rare Living was born out of that struggle.

I wanted to create a place where people like me, people living with rare diseases and chronic illnesses, could come for resources, connection, understanding, and hope. A place where no one has to feel like they’re going through this journey alone. A place that bridges the gap between patients, providers, caretakers, and advocates. A place where every rare life is valued.

To everyone who has come across Rare Living - whether you’ve read a post, listened to my personal podcast, joined an event, or simply stumbled upon our page - I want you to know this: you matter here.

I hope Rare Living makes you feel less alone. I hope it gives you tools, language, and strength when you need it most. I hope it helps providers understand our community better. I hope it encourages caretakers and loved ones to stand beside us with deeper empathy. I hope it reminds each and every person touched by rare disease that your voice is powerful, and you deserve to be heard.

We are rare, but we do not have to be invisible.

Thank you for being here. Thank you for being part of the Rare Living family.

With love and solidarity,

Giusiana, Founder & President @ Rare Living Foundation