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.

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 photo montage of three children with white pupil glow and turned eye early signs of retinoblastoma.

Retinoblastoma Awareness, Screening and Early Detection at One Rb World

Retinoblastoma awareness is the vital first step to cure! Early diagnosis leads to better outcomes for children, with less intense treatment. Sessions at every One Rb World explore how we can best raise parent, public and medical community awareness of common first signs, and develop effective screening for early detection. Below, we share sessions from the 2017,2020, and 2021 meetings.

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.

Retinoblastoma Research: Types, Challenges, Opportunities

Retinoblastoma research is vital to understand how this cancer behaves; treatment benefits, side effects, and risks; and impacts throughout life.  Findings help guide medical and supportive care for the child patient, survivor, and family.  Rb Survivor, Abby White explores different types of medical research; their goals, benefits, and limitations; and opportunities to overcome the current challenges.

Close up image of a single red bauble hanging from the branch of fir tree. The bauble captures various light and shadows, including one point of bright white. The overall impression is similar to the white reflex captured within a red eye reflex in the early stages of retinoblastoma.

10 Ways to Celebrate the Holidays in Hospital

Being in hospital during the Holidays means children and parents cannot join the usual festivities. But you can bring festive spirit and familiar traditions into your hospital space to delight and sustain you all. While cancer has no regard for Christmas, Rb Survivor, Abby White shares 10 ways to support your emotional wellbeing, and your child’s, and welcome festive cheer during a yuletide inpatient admission.

A group of children sit around a large round board game laid out on the floor. A young girl is kneeling with her body stretched out across the board as she takes her turn.

Child Life Specialists in Schools: Supporting Children With Cancer

Children need a lot of support when they begin or return to school after treatment for cancer.  Child Life Specialist and Elementary School Teacher, Meagan Fuller, explores how child life specialists in schools can help children with retinoblastoma adjust to school life, understand their experience, and find healthy ways to talk with peers about their cancer and visual impairment.

A fuzzy, brown teddy bear sits on a table with a blue table cloth. The bear has red and black plaid feet, a cream snout, black eyes, a brown nose, and a black smile. A nasograstric tube and a gastrostomy tube are inserted, and an IV pole and IV fluids are seen to the side. Behind the bear is a teddy bear sized hospital bed and a green curtain.

Play – The Key Ingredient to Pediatric Medical Care

Play is the language, university, and business of childhood. Medical play is a key part of child-focused health care, helping young patients learn, reduce fear, and take part in their care. Sophie Goldberg, child life intern and student of Child Life and Pediatric Psychosocial Care, explores what medical play is, and how you can use it to empower your child through their medical experiences.

A high doorway is framed by two Christmas trees, each standing about 10ft tall. They are exquisitely decorated with hundreds of gold lights, pink glass roses, and other ornaments that reflect and refract the light. A large banqueting table is set up in the centre, surrounded by high back red velvet chairs that contrast beautifully against the glittering gold candelabras. Gold crackers and sparkling goblets at each place setting hint at the anticipated party. Along the centre of the table, intricate models in cream, glitter and gold show scenes from the story of Cinderella. On the left of frame is the glittering expanse of a fairy-tale castle. To the right, two ladies gesture and watch the pumpkin carriage racing away over a bridge. Further right, Prince Charming stands below a clock tower as the hands point to midnight, and Cinderella races away down a flight of stairs, a single glittering slipper lost behind her. Almost off-frame, a chair is pictured, in which someone is sitting to try on a shoe. The overall setup is glittering splendour. The high doorway, significantly higher ceiling, very large, tall trees, and several statues between them, give the impression of a grand, spacious room out-of-frame.

12 Ways to Inclusive Festive Fun: How to Celebrate the Holidays with Your Child Who Is Blind or Visually Impaired – Part 2

The glorious visual spectacle of this Holiday Season can exclude and isolate a child with vision loss from retinoblastoma, but we can experience these traditions with all our senses. In part 2 of this festive blog, bilateral Rb Survivor, Abby White, shares six more ways to include blind and visually impaired children in Holiday traditions, creating delight for the whole family.

Six soft jute cloth bags in colours of earthy red, green, and gold sit in a row. They showcase two displaying kinds of tactile embellishment. On 3 bags, carved wooden tags shaped like a gingerbread man, Christmas tree and star clearly display the dates as raised tactile numbers. On the other three, foam stickers shaped like a tree, love heart and stocking, the numbers are large tactile cut-outs.

12 Ways to Inclusive Festive Fun: How to Celebrate the Holidays with Your Child Who Is Blind or Visually Impaired – Part 1

When a child has vision loss from retinoblastoma, highly visual aspects of this Holiday Season can be challenging, exclusionary and isolating. But a little thought and creative adaptation can completely change the experience. In part 1 of this 2-part blog, bilateral Rb Survivor, Abby White, shares 12 ways to include blind and visually impaired children in traditional Holiday activities.