A collage of 8 small photos, showing buildings and people doing various activities, all bathed in green, pink, blue or purple light. Along the bottom, a banner reads "RARE DISEASE DAY GLOBAL CHAIN OF LIGHTS" and “hashtag LIGHT UP FOR RARE", written in blue, green and pink. The event logo features handprints in the three colours, overlapping to form a fan around a white silhouette of a person from waist-up, and additional colours where they overlap.

Light Up for Rare and Share Your Retinoblastoma Colours on February 29!

Retinoblastoma is a rare cancer, affecting around 1 in 16,000 live births.  Rarity poses challenges from pre-diagnosis through treatment and lifelong care – Rare Disease Day matters to our community!  Discover how you can glow bright on the evening of February 29 to help form a Global Chain of Light for everyone living with rare childhood eye cancer and its effects.

Two women are seated at a round table in a conference room, directly facing each other as they engage in deep discussion. The woman on the left clasps her hands on her lap and looks highly focused. The woman on the right gesticulates with both hands raised to chest level, palms facing towards the other woman, with her fingers splayed. She appears to be explaining or emphasizing a point, or trying to convey information clearly. A tablet and notepad rest on the table between the two ladies.

Capture the Moment at One Retinoblastoma World 2024 in Hawaii

One Retinoblastoma World is community, conversation and collaboration for the best lifelong Rb care and support.  Previous participants share why the event is so valuable.  Rb survivor and WE C Hope CEO, Abby White, considers the many benefits of participating in person compared to attending online, and some ways we can travel “kuleana” to the conference.

Close-up photo of a young toddler with a blue and white pacifier in their mouth, looking directly at the camera. The right side of the child’s face is bathed in light while the left side is in shadow. The pupil of the right eye has a prominent pearly glow. The blurred background emphasizes the child's face. Overlaying the background, bold white text states "An early diagnosis is the best cure." The word “Cure” is emphasised in a flowing gold script.

Early Diagnosis is the Bedrock of Retinoblastoma Care

Despite advances in retinoblastoma treatment, effective care is challenged globally by delayed diagnosis. Early diagnosis saves lives and improves sight-saving options. Rb survivor and WE C Hope CEO, Abby White, explores common reasons for delayed diagnosis, four pillars needed to achieve routine early diagnosis, and how our One Rb World community is united in this goal.

Four ladies in party dress stand in front of a royal blue backdrop with a sign in bright turquoise blue and magenta that says Hope Without Boundaries.

Beyond Borders: Retinoblastoma in Africa and the Pacific

We recap a highly successful first conference in Africa for the International Society of Ocular Oncology, and look forward to One Retinoblastoma World 2024 in Honolulu, Hawaii. With One Rb World meeting co-chairs Dr. Jesse L. Berry, Children’s Hospital Los Angeles, USA; Sandra E. Staffieri PhD, Royal Children’s Hospital Melbourne, Australia; and Marissa D. Gonzalez, World Eye Cancer Hope USA.

A wide view of a grassy park with inflatable skee ball, obstacle course, and bounce house alongside giant versions of Connect 4 and Jenga. Next to the games are tables and chairs under white tents and a red picnic shelter. Guests of all ages are mingling throughout.

Fun in the So Cal Sun: 6th Annual Southern California Retinoblastoma Family Day

Childhood eye cancer and its lifelong impacts can be a lonely, overwhelming experience. Connecting with others who understand is a healing balm for many. On November 4th, nearly 100 young patients, survivors, family and friends gathered to celebrate and support the amazing Rb community in Southern California. Marissa D. Gonzalez, bilateral Rb survivor and WE C Hope USA President, shares highlights from another delightful Family Day.

Destigmatizing Vision Loss Within the Retinoblastoma Community

Vision loss is a major part of the retinoblastoma experience, but rarely discussed in depth within our community. Sassy Outwater-Wright explores the trauma of vision loss, the experience of living with reduced or no sight, and pathways to living well at every age and stage of sight-loss.

The silhouette of a medical caduceus symbol features two snakes winding around a winged staff. A weighing dish hangs from each wing. The scales are in balance.

Unveiling Shadows: Cognitive and Unconscious Bias in Retinoblastoma Research

The human mind can subtly influence scientific research, with potentially serious consequences for patient care and outcomes. Rb survivor and WE C Hope CEO, Abby White, explores the nuanced world of cognitive and unconscious biases in retinoblastoma research, and strategies that can minimize their impact to ensure objective research and the best care possible for all.

a baby chews an anaesthetic mask

Retinoblastoma Treatment at One Rb World

Prompt, appropriate medical care is vital for all children with retinoblastoma. A range of treatments are used depending on extent of the cancer, its risk of spread, and the child’s health and wellbeing. Sessions at every One Rb World explore aspects of medical care, and how we can ensure the best possible outcomes for each child. Below, we share sessions from the 2017, 2020, and 2021 meetings.

Dan Gombos presents on the challenges of obtaining effective care for the adult with distant history of Rb. The slide behind him is titled “When It’s Time For Change” and reads: Once cured – the team may change; Few transition to a survivorship clinic; Even less to a survivorship clinic with Rb experience; Some children are never told of their diagnosis; Children grow up, move, and may live very far from any Rb specialists.

Retinoblastoma Survivorship at One Rb World

Retinoblastoma is a complex cancer with potentially significant and serious lifelong impacts for the survivor and all family members. Sessions at every One Rb World explore the risks and challenges survivors and families encounter beyond childhood eye cancer, and how we can improve comprehensive survivorship care throughout life. Below, we share sessions from the 2017, 2020, and 2021 meetings.

A lantern with heart-shaped window casts a large rosy heart glow on a blue painted wooden wall, and a pool of light across the floor where it sits.

Bound by Love, Unbound by Cancer: Retinoblastoma through the Lens of Relationships

Retinoblastoma can have a profound impact on family relationships, during diagnosis and treatment, and throughout life. Linda Conyard MGestT delves into the factors affecting relationships, and the best ways to support families. She also explores attachment theory, and how it can help us understand family dynamics when a child has a risk for, or diagnosis of, childhood eye cancer.