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 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.

A group of teenagers enjoy a game of volleyball on a sand court surrounded by trees, under a cloud-dusted blue sky.

When Survivors Grow Up: Family Experiences After Retinoblastoma

Retinoblastoma is highly curable, but lifelong impacts are significant for survivors, siblings, parents and extended family. After a particularly painful personal insight, Rb survivor and WE C Hope CEO Abby White asked families and survivors about their own experiences of life beyond childhood eye cancer care.

Close-up of a baby's face

How Do I Create A Family When I Have An RB1 Mutation?

Individuals who carry an RB1 mutation have a 50% chance of passing the retinoblastoma cancer syndrome on to each child.  Melissa Mills, bilateral retinoblastoma survivor and genetic counsellor, explores the psychological and physical impacts of this experience, and the different routes to creating a family when a prospective parent has an RB1 mutation..

a baby plays with an anaesthetic mask

10 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.

Do you know the difference between a biopsy and pathology, or an RB1 gene deletion and Chromosome 13q deletion? Do you know how a retinoma becomes retinoblastoma or when remission becomes cure? In Part 2 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.

A baby has a squint - the right eye is rutned in towards the nose.

8 Commonly Confused Retinoblastoma Terms, What They Mean and Why Getting Them Right Matters.

Do you know the difference between lazy eye and squint, or an ocular oncologist and a paediatric oncologist? Do you know when extraocular Rb becomes metastatic, or why trilateral Rb is neither of these? In Part 1 of a mini-series, WE C Hope CEO Abby White explains these and other terms, and why using them correctly is important.

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.