Willow blog

Our Nurse Advisor Bev shares her story for Rare Disease Day

February 28, 2024

I am a trained nurse, trained in both adult and children’s care, and have been working in young adult palliative care for almost 20 years. I even established the first ever young adult hospice at home and received an MBE for my efforts.

For young people living with a rare condition, every day should be precious. Since starting at Willow I have been the driving force behind ensuring we receive more referrals from young adults with rare diseases.

Willow is one of the few organisations supporting young adults focusing solely on quality of life, providing unique and unforgettable moments and experiences tailored to each individual. Every effort is made to always ensure a stress-free, seamless experience, not only meeting but exceeding expectations.

I have worked with rare disease organisations, professionals and patient support group to ensure they know more about the great services Willow provides. During the past two years I have contacted more than 50 rare disease professionals and groups, and attended numerous conferences and events. Everywhere I go, I get amazing feedback about the services we offer.

I am extremely passionate about young adult palliative care and believe the services Willow provides makes a big difference to this group of young adults.