SAILAJA MAGANTI

PATIENT, ADVOCATE, FOUNDER

With almost 20 years lived experience of the rare, debilitating and distressing skin condition, Prurigo Nodularis (itchy, neuroimmunological, inflammatory condition) I am the Founder and Chair of the Board of Trustees of the charity Prurigo Nodularis International (PNI), which has over 5,000 global members. I am a patient leader, patient expert, as well as a passionate and outspoken advocate, determined to see rare disease patients receive the dedicated care pathways and treatments they deserve and need.

My Story

I’m Sailaja, with over 20 years lived experience of the debilitating, rare Neuro-Immunological skin condition Prurigo Nodularis or PN. I’m just an ordinary person, who was living my life, until one day a single solitary lesion set me on a lonely path that would turn my whole world upside down, take me to the most difficult places I could ever have imagined and ultimately changed the course of my entire life.

As with most things in life, experience and lots of it have brought me to a place of stability, yes, I have bumpy times, very bumpy and a lot of them too, but that’s how it is to live with PN. For many years of my PN journey I have hidden, ashamed of being imperfect in a seemingly perfect world, very much in the Prurigo Nodularis shadows. Just when I thought I would always walk this burden in solitude I stumbled on a private community on Facebook started by a wonderful lady called Rebecca Dittman. I am now the founder and Chair of the Board of Trustees of the only global patient led charity – Prurigo Nodularis International (UK registered charity). We have a global patient community of over 5100. I am a part of the EUPATI Patient Expert Training Programme 2024 -2025 cohort. I am a passionate and outspoken advocate, determined to see rare conditions receive the dedicated care and treatments they need and deserve, on par with mainstream conditions.

My areas of expertise and experience include:

• Patient organisation expert for Prurigo Nodularis Health Technology Assessments in the UK.
• Working group member of the Rare Disease Research Network, a partnership between CamRare and the Patient Led Research Hub, funded by NIHR and sponsored by Cambridge University Hospitals NHS Foundation Trust.
• Member ‘Working with Patients and Public Forum’ at the UK’s Faculty of Pharmaceutical Medicine.
• Prurigo Nodularis advisor, consultant and industry partner.
• Prurigo Nodularis educational initiatives.
• Writer, Speaker & Panellist.

My background includes a lengthy career in the financial services industry, I have been able to leverage and transfer the deep and broad skill-set gained to my patient advocacy. Previous roles have included, front-office investment banking, as well as varied roles at the UK’s central bank – the Bank of England. I’m married to a world-class guitar virtuoso, composer-songwriter.

Sailaja Maganti

Rare disease patient, passionate advocate, charity founder

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