a baby plays with an anaesthetic mask

7 Ways Caregivers Can Support Infant Mental Health during Cancer Care.

Infants experience a wide range of emotions, the depths of which are just beginning to be understood. Morgan Livingstone CCLS discusses how the external environment influences infant mental health, and the varied ways parents and medical professionals can help babies cope and thrive through medical interventions.

"I need more sleep." Cat sleeping with head rested on a typewriter.

Sleep, Photosensitivity and Retinoblastoma

The body’s sensitive biological clock regulates sleep, which is vital to our physical and mental health. Dr. Iona Alexander explores how some effects of retinoblastoma treatment may disrupt this highly tuned system, and invites survivors to help researchers understand the relationship between these effects and sleep.

Tree of Life - thr trunk of the tree is a DNA double helix

How DNA and Genetic Knowledge Changes Lives: the impact of genetic testing for five families affected by retinoblastoma

Retinoblastoma survivor and WE C Hope co-founder / CEO, Abby White, considers the central importance of DNA and genetic knowledge in caring for the child and family. She introduces us to Alice, Jamie, Megan, Rachel, Peter and their families, to find out how genetic testing can influence treatment, screening and lifelong care.

A diagram showing DePict in the midlle, next to the patient, and all members of the care team who can interact with the system to enhance the child's care. All care is underpinned by child life support.

DePICT the Cancer Care Journey: Overcome Rarity Through Collaborative Research

Brenda Gallie, global leader in retinoblastoma clinical care, research and innovation, discusses an exciting technology promising to improve care during treatment and beyond. DePICTRB supports collaboration among the child’s entire circle of care, gives parents open access to their child’s record, and empowers clinical research.

“Some journeys don't have endings, they lead to new beginnings. These are the journeys that lead to great adventures!” Alex Haditaghi from ‘Softly, As I leave her’ 2016. Quote set against background of sunrise painting a golden pathway over blue ocean, into a slightly clouded blue sky.

One Retinoblastoma World, A New Realm of Discovery

When Sandra Staffieri left Australia in August 2012 for a conference in Italy and a tour of retinoblastoma centres in North America, she had no idea how radically the journey would change her life and care at the Royal Children’s Hospital, Melbourne. Yet as she departed, the key destination was not even on her itinerary…

Through Our Eyes at One Retinoblastoma World 2017

Parents and survivors shared their thoughts on the “Through Our Eyes” wall at the One Rb World meeting in Washington D.C., 9-11 October 2017. These powerful insights were gathered anonymously via this website during September 2017, and highlight wide-ranging concerns.

A large, diverse group of people pose together in a conference room. Most are dressed in smart casual attire. Many are smiling and waving at the camera, and those in the centre are holding a large banner that reads "One Retinoblastoma World". A large world map features on the wall behind the group. At the front, two ladies sit close together holding a plush elephant with removable eye between them. The elephant is bedecked in red, white and blue flowers.

One Retinoblastoma World 2017, Washington D.C.

Focused on best care for all, One Rb World 2017 included the first ever US national Family & Survivor Day. The collaborative program covered awareness, treatment, parent advocacy, life-long care, research, child life and the pathway to progress for our global community.

A young boy is wrapped up in a hug from an Elmo character.

I Am a Child, Not a Case!

Children with retinoblastoma are much more than a medical specimen. To achieve complete cure, we must consider them as a whole person, not just an eye or a body to be treated. A single word can completely change our focus.

Stronger Together: Patient Engagement in Retinoblastoma Research

The Canadian Retinoblastoma Research Advisory Board is working with patient families to guide future research priorities. Engaging parents and survivors can lead to improved health outcomes. Read on and sign up today.

Pathology slide showing advanced retinoblastoma

The Anatomy of Retinoblastoma Pathology

Expert retinoblastoma pathology identifies cancer spread to outer layers of the eye or the optic nerve, guiding post-operative care. Accurate, timely pathology is key to long-term survival when a child has advanced cancer.