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.

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.

Drawing of a distressed looking woman in a blue shirt with one hand in front of her face and the other held up beside her head, fingers splayed. The background of cyan blue circles, swirls and clouds has a tangle of thin circles and stars surrounding her head, indicating that she is distressed or confused.

Beyond Stress: PTSD Symptoms, Resources, Strategies and More

Retinoblastoma is highly stressful for most patients and their families.  Too often, it is a traumatic life experience that has long term impacts on mental health.  Jules Verdugo, child life & pediatric psychosocial care student, looks at the difference between normal stress reactions and PTSD, symptoms, how to get help, resources, some strategies for managing symptoms, and post traumatic growth.

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.

10 different people’s arms reach inwards to clasp hands at the centre. They represent different races, and their sleeves are brightly coloured.

Multicentre Research Collaborations for Retinoblastoma

Retinoblastoma is a rare cancer, posing major challenges to researchers everywhere. In part 1/2 of this article, Rb survivor and WE C Hope CEO, Abby White, explores the many ways multicentre research collaboration can overcome these challenges and change patient care and outcomes – for the child, survivor, family and professional.

An African doctor looks on as another uses a handheld digital camera to visualise a child's eyes during an exam under anaesthesia.

Global Eyes: Connect, Communicate and Collaborate for Cure

Sharing knowledge and experience, and working together, are vital to build better retinoblastoma care. WE C Hope CEO, Abby White, highlights two key meetings on the horizon that will unite professionals, scientists, and parents and survivors who live with the impacts of childhood eye cancer, to advance care for all.

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 African doctor looks on as another uses a handheld digital camera to visualise a child's eyes during an exam under anaesthesia.

TNM Staging System for Retinoblastoma

Retinoblastoma is staged to help doctors describe the extent of cancer in a child’s body, define potential for cure, vision and eye salvage, identify the best treatments, and compare impact of different therapies. Dr. Ashwin Mallipatna explains the TNM Staging System for Retinoblastoma and why it is the best approach for patient care.

Leslie sitting in a rocking chair at the hospital, holding 7 month old Thomas, Mason and Luke. Thomas is dressed in a blue and white striped outfit, wearing a blue eye patch on his right eye, Mason is dressed in green hospital scrubs with an IV that is out-of-frame. Luke is also dressed in a blue and white outfit. All the boys are alert with wide open eyes and partial smiles. Leslie's lap is quite full.

Triplets with Cancer: Surviving and Thriving Through the Unexpected

A retinoblastoma diagnosis is shocking for parents, and the journey through complex specialist care can be highly stressful. RB1 genetics mean this cancer often affects more than one child in a family. Leslie Low shares her experience of caring for her triplets – all diagnosed with cancer in both eyes, and the things that helped her family cope; physically, psychologically, and practically.

A slide from Sarah’s presentation, titled “Thank You”, with a single photo and the One Rb World 2021 Logo below. In the photo, Sarah sits on a rock structure at the top of a mountain. Her body is facing to the left, her legs outstretched, and her feet resting on a different rock. She is leaning against the rock she is seated on, looking away from the camera at the view. Slivers of blue sky peak through the blanket of clouds, and in the distance, many trees, farms, fields and national parkland can be seen from this high vantage point.

One Rb World 2021: Planning, Creating, Sharing and Raising Hope Together

On 1-3 October, we hosted a hope-filled One Rb World 2021 meeting. Planning and hosting is always an adventure, and the 6th One Rb World was especially so! Co-Chairs, Dr. Sandra Staffieri PhD, Rb Care Co-Ordinator, Royal Children’s Hospital, Melbourne, Australia, and Marissa Gonzalez, Bilateral Rb Survivor and President, World Eye Cancer Hope USA, share behind-the-scenes insight and conference highlights.