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.

Close-up of a toddler with blue eyes, one of which has a creamy glow in the pupil. The child’s mouth is slightly open, with a curious or surprised expression. The child wears a pastel lilac jacket. The background is blurred and indistinct, putting the focus on the child's face. Overlaying the background, bold white text states "PREVENT CHILDHOOD BLINDNESS." Below is a thin yellow horizontal line.

Illuminating a Child’s Health: The Power of Glow Awareness and Innovation in Detecting Retinoblastoma

Worldwide, many children with eye cancer are diagnosed late.  Early diagnosis saves lives, and offers the best opportunity for safe vision saving therapy.  Leukocoria awareness advocate, Megan Webber, explores why glow awareness and community eye screening are vital to early detection and referral, and how KnowTheGlow and WE C Hope are helping to ensure children receive timely, effective care.

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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.

An illustration of a syringe holding medicine. The syringe casts a long shadow in the shape of a dollar symbol.

Investing in Hope: The Quest to Fund Retinoblastoma Research

Research funding is vital to improve retinoblastoma early diagnosis, life and sight-saving treatment, family support, survivor care, and cancer prevention. But securing the funds for rare cancer research is very tough, often demoralising for researchers and clinician-scientists. Three retinoblastoma researchers share their experience, and two organizations helping to drive Rb research forward invite you to help.

A group of people representing diverse ethnic backgrounds are sitting or standing around a table scattered with post-it notes. They are deep in conversation, and several are reaching out to move post-it notes into new positions on the table.

United Against Retinoblastoma: The Importance of Global Data and Collaboration

Understanding how retinoblastoma affects children is critical to improve diagnosis, treatment, support and outcomes for all.  Mattan Arazi, M.D and Ido Didi Fabian, M.D., MPH, world-focused ophthalmologists from Sheba Medical Centre, Israel, explore why global data and collaboration are so important in Rb research, and the knowledge, progress, and hope they are building for families and professional teams worldwide.

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.

An ethnically diverse group of people sit together around a table, moving puzzle pieces. The photo is taken from above, and only the hands of the participants are visible.

Multicentre Research Collaboration: the Challenge and the Light

Multicentre research is complex.  Challenges can arise in the process of bringing its  many benefits to patients, families and professionals. In part 2/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores common challenges, with solutions for each, and how our childhood cancer community encourages healthy, successful collaborations.

Dr. Skalet examines a child under anesthesia using an indirect ophthalmoscope. Published with permission.

Familial Retinoblastoma Screening: When Eye Cancer Runs in the Family

Familial retinoblastoma affects more than one member of the same family. Diagnosing children early provides the best opportunities for life and sight-saving care. Alison Skalet, ocular oncologist and director of the Rb service at Casey Eye Institute, Oregon Health & Science University, explores opportunities for early diagnosis when a parent, sibling or other relative has already been diagnosed.