Aisha Seedat

Tell us about your experiences of rare conditions:

I was diagnosed with a rare disease, Morquio Syndrome, from birth. Having a rare disease myself has made me passionate about supporting children and young adults like me and especially supporting their families too.

In addition to being a Patient Ambassador for Medics 4 Rare Diseases, I’m also a Guest Speaker for Demontfort University for the Interprofessional Education Module, where I talk about my lived experiences of rare disease and mental health.

Why did you put yourself forward to join the We R Rare Steering Group:

My whole life I have been an advocate for rare diseases. I’m already a Patient representative as part of the Patient and Carer Group with the Medical School of the University of Leicester and part of the Rare Quality of Life Community which empowers diverse communities, by bridging gaps in care and advances the principles of EDI. Additionally, as a public speaker and advocate, I regularly talk about my journey with a rare disease and how I overcome the largest of hurdles. By joining We R Rare, it’s given me the opportunity to use my professional and personal lived experiences to advocate for people with rare diseases and ensure research and clinical services and shaped with the patients at its centre.

What would you like to see changed in the future of rare conditions? 

I’m delighted to be part of the We R Rare Steering group and hope to see a change in the future where rare conditions can be diagnosed and treated promptly – rare conditions are becoming more common than you think!