LORI’S STORY

I’m Lori Renna Linton, and I’ve been living with Hereditary Spastic Paraplegia—HSP for short—since 2008. HSP is a neurological condition that damages the nerve pathways between the brain and spinal cord, making it harder to control the muscles in the legs. Over time, this leads to stiffness, weakness, and difficulty walking.

Living with a rare disease changes every part of your life. Stories can help create empathy, but only those of us who live with these conditions truly understand what that impact feels like day to day. That’s why the patient’s voice matters—it carries knowledge that can’t be learned any other way.

As a patient representative in ERN-RND, I’m able to turn that lived experience into action. I’m trusted to help bridge patients and families with clinicians who have the expertise to help them. In June last year, I supported the parents of a 1.5-year-old girl from Romania, Irina Călăcean, by connecting them with a specialist at Sant Joan de Déu Hospital in Barcelona. For that family, this cross-border connection meant hope, clarity, and access to care that would otherwise have been out of reach. This is the real impact of ERN-RND—turning collaboration into care for people living with rare diseases.