A boy wearing a hospital gown lies in hospital bed. He is attached to many monitors and tubes, smiling and giving a thumbs up.

10 Things Parents Want You to Know About Retinoblastoma

Caring for a child with retinoblastoma and healthy siblings is a complex journey for parents, from before diagnosis, through treatment, and beyond. Rb Mom and WE C Hope USA director, Lori Banos, shares 10 key messages parents have for health care professionals, fellow parents and the wider community.

A woman wearing a harness stands on a ship high above the waves. The setting sun and sail ropes are visible behind her.

10 Things Retinoblastoma Survivors Want You To Know

Retinoblastoma is highly curable. But for many survivors, it has lifelong impacts. In 2019, our Alphabet of Hope shared survivor insights of #LifeBeyondRb. Rb Survivor and 2019 alphabet curator, Abby White, highlights 10 important messages from survivors about life beyond treatment and cure of childhood eye cancer.

The gold pin on a compass points to the word "survivorship"

7 Survivorship Tips and Tricks: navigating the adult post-retinoblastoma world

Diagnosis and treatment of eye cancer in early childhood is only the start of a lifelong story for many individuals affected by retinoblastoma. Marissa Gonzalez, Rb survivor and President of World Eye Cancer Hope USA, shares seven tips for being an active participant in your retinoblastoma survivorship journey.

A young girl with blond hair and wearing a Minnie mouse dress is standing on a small round trampoline, holding on to the arched handle. She has a white pupil glow in one eye, and her other eye is turned outwards.

If You Tell Them, They Will Know: raising awareness of retinoblastoma signs can save lives, eyes and sight.

Strabismus (turned eye) and leukocoria (white pupil) are the most common early signs of retinoblastoma.  Sandra Staffieri, Rb Care Co-ordinator at the Royal Children’s Hospital, Melbourne, explores why parent and healthcare provider awareness of these signs is vital to early diagnosis of childhood eye cancer.

A child life specialist blows bubbles through an anesthesia mask towards a little girl

Child Life in Retinoblastoma Care

Child life can profoundly impact a child’s experience of retinoblastoma, and their quality of life. However, many children treated at specialist retinoblastoma centres lack child life support, and their parents feel unsupported, compared with other cancer patients. Abby White explores the challenges and ways to overcome them.

A female adult plays patient, cared for by a group of children dressed in medical outfits. She wears an eye patch on her left eye, and the children put bandaids on her arms. One of the children is wearing an anaesthetic mask.

Child Life Programs: Play With Purpose at Retinoblastoma Gatherings

Eye cancer is a potentially overwhelming experience for young children, whether patient or sibling. Child life can radically improve care and life for the entire family, but too many children lack access to this specialist support. Abby White shares how WE C Hope supported Child Life programs are helping to change that.

A young girl smiles broadly as she holds her arm out, thumb up.

International Care: Challenges and Opportunities

Families and medical professionals worldwide seek retinoblastoma care at centres offering treatments that are unavailable in their home country. Many families contact WE C Hope for assistance before, during or after such treatment. Abby White explores the challenges they experience and what can be done to help improve outcomes for their children.

A young girl and her father share a smile

Perfect Vision: Care and Cure for Children with Eye Cancer in Developing Countries

Retinoblastoma is highly curable with early diagnosis and modern therapies. But 90% of affected children live in developing countries, and globally, less than 3 in 10 children survive. Rb survivor and volunteer CEO, Abby White, explores the biggest challenges to care in developing countries, and some ways to overcome them.

A graphic design primarily in dark tones with a central visual of an open book, its fan of pages emitting a glowing, golden light that spreads outwards. Above the book, the words "Speak Up!" are emphasised in a large, sparkling gold font. Below the book, plain gold text reads "Share Your Retinoblastoma Story". The overall aesthetic is inspiration, awareness, and hope, and the open sharing of stories and information.

4 Key Ways Sharing Your Story Makes a Difference, and Tips for Telling

Every individual in the retinoblastoma community has a unique story to tell – whether parent, survivor, sibling, professional, extended family member or supporter. Abby White explores the importance of storytelling, and the many ways in which sharing your story can make a difference – to your own life, and to the world.

Close up of a child with leukocoria detected by CRADLE, with results boxes around both eyes and magnified images of both eyes below the main photo.

From CRADLE to Care: Your Photos Can Help Scientists Build an App for Parents to Diagnose Serious Child Eye Disease Early.

A White pupil is the most common early sign of eye cancer in young children, and it’s usually seen first in photos. Do you want to turn your smartphone into a powerful cancer-detector? Mark Billings, WE C Hope USA Director, tells the story behind the CRADLE app and explains how you can help scientists improve it.