Hi, I’m Caitlin and I live with cystic fibrosis, a rare, progressive disease that affects the respiratory and digestive system.

Professionally, I work in healthcare communications, which has opened my eyes to the complex and inspiring world of patient advocacy and engagement.

Due to amazing dedication from patient organisations, the pharmaceutical industry, and policymakers, I am lucky enough to have access to a drug that has dramatically changed and extended my life.

With a world of opportunities opening up in front of me, I was inspired to do what I could to help others get access to lifesaving care.

In 2023, I decided to combine my professional passion and personal experience and become a qualified patient expert. This is where I met the wonderful Clarinda, and the rest is history…

I hope to use this platform to share inspiring stories, encourage collaboration, and spark discussion. 

Hi there! I’m Clarinda, and I have neuromyelitis optica spectrum disorder, a rare autoimmune disease of the central nervous system.

I have always been fascinated by medical research and have worked in science communication for close to two decades.

Since my diagnosis in 2010, I’ve found myself bringing my research and science background into my own medical consultations and have been disappointed to find doctors dismissing my questioning approach.

But for all its ups and downs, my journey has been uniquely rewarding because it led me to my purpose — patient advocacy!

As I upskilled myself as a patient expert, I met a multitude of effervescent, relentless advocates and healthcare professionals who will stop at nothing in their quest to create a better world for patients.

I’m super excited to join forces with Caitlin to amplify their voices and bring their stories to you!