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.

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.

A male African doctor looks on as a female surgeon uses a handheld digital camera to examine a boy's eye during an exam under anaesthesia. Both doctors wear surgical scrubs, masks, gloves, and caps. A laptop computer sits open beside the female doctor, but the images projected from the camera onto its screen are not visible in the photo.

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 less intense treatment and better outcomes for children and their families. 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.  Abby White gathers together sessions from the 2017, 2020, and 2021 meetings.

Promotional card in tropical colours. Text reads: "One Retinoblastoma World. Virtual Conference, October 1-3. A global conference for eye and cancer specialists, researchers, parents, and survivors. Register Today!” www.wechope.org/onerbworld

Register Now for One Retinoblastoma World 2021 – Sharing Ideas, Opportunities and Friendship

As the 6th One Retinoblastoma World Conference fast approaches, this year’s organizers Sandra Staffieri and Marissa Gonzalez, together with Megan Webber, are excited to share an update. They give an overview of the program, highlighting some of the sessions and goals, and the need for global discussion and collaboration involving all stakeholders.

A pink banner with the words “register now” spans the top of the image. Diamond Head in Honolulu is bathed in light, under a slightly cloudy blue sky. The One Rb World logo includes a yellow flower for Hawaii. Text reads: One Retinoblastoma World | Virtual Conference | October 1-3, 2021

Register Now for One Retinoblastoma World 2021 Virtual Conference!

Join World Eye Cancer Hope and local organizers from Australia for the sixth One Retinoblastoma World Conference, taking place virtually from October 1 – 3, 2021. Marissa Gonzalez, WE C Hope USA President, and this year’s Hosting Chair, introduces the conference and what’s in store for this unique collaborative program uniting professionals, families and survivors.

Two photo panels side by side. On the left, a baby boy is seen with the left eye turning in towards his nose. On the right, a baby girl has a red reflex in her right eye, while her left eye shows a dull creamy-white reflex.

Eye of the Storm: the impact of ‘not knowing’ on mental health

Retinoblastoma Awareness Week promotes life and sight-saving early diagnosis. Sandra Staffieri, Rb Care Coordinator at the Royal Children’s Hospital Melbourne, highlights the importance of raising awareness among parents, caregivers, health professionals and survivors; and how lack of knowledge and delayed diagnosis can impact children, parents, and adults with second cancer risk.

Young patients put a brannula in the arm of a medical play puppet. They are wearing surgical gloves.

Child Life in Kenya: The Sally Test Child Life Program

Children with cancer experience invasive procedures and stressful events throughout their medical care that can impact their ability to cope, inhibit their development and negatively affect their health and well-being throughout life. Child life supports effective healthcare and reduces trauma. Morgan Livingstone CCLS describes how WE C Hope is bringing hope through Child Life to children and their families in Africa.