At the 2026 WORLDSymposium, Group CEO Bob Stevens was honoured with the PAL Award. In his speech, he emphasized the importance of standing together as a global community and that this work must always be about people not profit or politics.
PAL award: honouring patients, families and the power of coming together
Receiving the Patient Advocacy Award wasn’t an honour Bob accepted for himself but for the community of patients, families and carers whose courage continues to shape the mission we share.
In his remarks, he spoke openly about the realities faced by families living with rare diseases, the emotional weight, the uncertainty and the strength it takes to keep going. He also spoke as someone who has walked alongside these families, sharing his own experiences of loss and recovery.
A key message was the importance of standing together as a community.
Rare diseases do not recognise borders and neither should support, research access or compassionate care.
Bob called on all rare‑disease organisations to work together and to challenge more, because collaboration is the only way to create lasting change.
For patients and carers, this means you are not alone. A global community stands behind you, one that listens, learns and acts.
He reminded us that this work can never be about profit or politics:
It must always be about people.
Your stories, your resilience and your needs are what drive our commitment. You are the reason therapies are pursued, support systems are built and advocacy continues.
Bob paid tribute to individuals whose lives have been lost to rare diseases. Their legacy is a reminder of why every moment matters.
He closed with a message from Oliver (Ber), one shaped by love, loss and hope.
Live more. Love more. Laugh more.
Moments after his speech, Bob also shared another significant message, echoed by Dr. Fiona Stewart:
How amazing that Bob used his PALS Award speech to highlight prostate cancer and urge men to get their PSA checked. To me, as Sam’s wife who also had to have a radical prostatectomy like Bob, this means a lot. Here’s proof there’s life after diagnosis!
