A small group session during One Rb World 2017 in Washington D.C.
Welcome to One Retinoblastoma World 2024 in Honolulu, Hawaii.
- Informal Social Day: Monday, October 14, 2024 – not part of the official program.
- Survivor and Family Focused Programming: Tuesday, October 15, 2024
- Full Scientific Program: Wednesday, October 16, 2024 and Thursday, October 17, 2024
Awareness, medical care, and family support are vital to effective care of children with retinoblastoma. Removing any of these three elements dramatically reduces a child’s quality of life and chance of survival. Beyond cure, lifelong care is vital for individuals and families with complex impacts and risks from this cancer.
Providing unique educational and networking opportunities, this working meeting focuses on building connections and collaborations to enhance care for all children, survivors, and families.
Throughout the program, every session will be composed of two parts:
- A family / parent / survivor focus exploring real-world application of topics.
- A medical focus providing context and evidence-based information.
Clinicians, researchers, survivors and families, we all learn from each other, and together we will improve outcomes – no matter where in the world we live or work.
We encourage professionals, survivors and family members to attend all three days of the program for maximum benefit. Full participation will help everyone understand all aspects of retinoblastoma more deeply, and nurture a stronger global community.
Day One – Family & Survivor Day Program
Our Family and Survivor focused programing will include a mix of presentations, panel discussions, and open discussion covering a range of topics, with plenty of networking time to meet and chat with others. Speakers will include parents, survivors, medical professionals and researchers who work with patient families.
Coming together with others who are impacted by retinoblastoma is deeply healing and immensely uplifting. Sharing experiences and knowledge, friendship, laughter, hugs and hope, and sometimes tears.
The day will culminate in an evening reception filled with Hawaii’s Aloha spirit, welcoming the next two days’ scientific program.
Days Two and Three – Medical Advancements
We are planning a full, diverse, and engaging program. Each session will be facilitated jointly by a medical professional and a parent or survivor. 2-3 speakers, identified for their expertise in the field, will deliver short talks that cover a range of perspectives before we open the floor for discussion, and small group work to engage the entire delegation.
Open discussion time in each session invites everyone to explore topics and questions together. A space where professionals, scientists, parents, and survivors can share knowledge and experience, and collaborate to tackle some of the biggest challenges in retinoblastoma.
Awareness, Screening, Referral, and Early Diagnosis
We know that awareness of retinoblastoma’s early signs are essential for survival. Many centers and non-profit organizations around the world have implemented strategies to improve awareness and achieve this goal. We will learn from others’ successes, and examine how we might replicate the same programs in our individual corners of the world.
The ArcLight is changing the world! This low-cost, high tech ophthalmoscope is being rolled out in low and middle income countries to great effect, revolutionizing the potential to diagnose retinoblastoma early in low-resource settings. We look forward to sharing an update on how this simple device is improving children’s diagnosis and in turn, their survival.
Genetics
Genetic testing is evolving faster than we could have imagined when the RB1 gene was first cloned in 1986 – the first major genetic breakthrough among all cancers! We will provide an overview of retinoblastoma genetics and how new discoveries can support management and surveillance.
We will also explore how we can bring this critical component of retinoblastoma management equitably around the world. And ask what happens if the genetics results are not fully informative.
Treatment Decision-Making
At diagnosis or relapse, parents are often provided with complex information that they will have little time to process and consider – yet are expected to make informed decisions that are best for their child. We will explore clear understanding of high-risk pathology, and how we can ensure parents receive all the information they require to make an informed decision, rather than being advised “only one treatment is available”.
Clinical Trials, Patient Research, and New Therapies
As research continues to advance, such as chemo plaque and other budding treatments, the Children’s Oncology Group Clinical Trials aim to better understand treatment outcomes. From the required number of intra-arterial chemotherapy cycles and aqueous research to the lived experiences of patients, parents and survivors. We will look at how research guides treatment decisions, with the goal of achieving the best outcomes for individuals, and explore the latest progress in retinoblastoma research.
Psychosocial Health and Child Life
As always there will be interactive child life programming throughout the entire three-day event. This program is open to all children of retinoblastoma families in attendance, including siblings and children of adult survivors.
The main conference program will also include sessions exploring the critical importance of family and child psychosocial support during treatment and the years beyond.
Rb and Global Health
As the most survivable of all pediatric cancers, retinoblastoma has been selected as one of six index cancers by the World Health Organization (WHO). Index cancers help the WHO and its partners evaluate progress in diagnosis, care provision, and patient outcomes, and identify where needs are highest – both geographically, and within healthcare systems and patient support structures.
In a joint session with the International Society of Paediatric Oncology (SIOP), we will hear about the activities the organization has supported over the last two years to improve timely diagnosis of retinoblastoma. Their central focus is on educating health professionals for early detection, and developing referral pathways to care.
SIOP Oceania, one of the SIOP continental branches, is actively developing in-country capacity for children, so they can be diagnosed early and receive treatment in their own country, surrounded by familiar support networks of family, friends and culture.
However, sometimes in-country care is not possible, as not all the resources will be available that the child may require. It is therefore critical to develop clear, sustainable referral pathways for children to receive out-of-country care, and support for their family throughout their treatment. We will explore how our global community can work together to achieve swift, continuous treatment and follow up care for these children and families.
Survivorship
Curing retinoblastoma is not enough – its impact is felt throughout one’s life. We will explore aspects of life beyond treatment, how we can understand more about these impacts, and survivor needs. With knowledge, we can identify potential changes in treatment and support during the child’s eye cancer treatment, and shape lifelong support and medical care.
Patient-Led Research
What is parient-led research and how can families and survivors participate in such research. What are the considerations from the perspective of the parent, survivor, scientist, and clinician? In our community where many are affected by sight loss and medical trauma, what do we need for accessible and inclusive research to happen?
Research funding is competitive and even more so for a rare disease like retinoblastoma – both as a cancer and an eye disease. How can we leverage philanthropy to support the research we so urgently need for retinoblastoma – in the acute phase of treatment and in survivorship?
Virtual Program – Join From the Comfort of Home
Since 2017, WE C Hope has live-streamed many One Rb World sessions, making them available after the event. We know this extended knowledge and collaboration to all corners of the world, so we are delighted to offer the 2024 program in a hybrid format.
Benefits of Meeting In-Person
Nothing can replace the power of immediate, present human interaction at the heart of the One Rb World experience. While virtual attendance offers access and convenience, being physically present in Honolulu offers a richer, more immersive experience. In-person interactions foster deeper connections, collaborative opportunities, and a shared sense of purpose and commitment. This is what makes One Rb World such an effective forum for positive change in retinoblastoma care.
For example:
Personal Connection
Virtual attendance:
Remote interactions lack the depth of in-person connections that are crucial for families, survivors, and professionals alike managing the psychosocial impacts of retinoblastoma. This can reduce the level of empathetic understanding and support, influence the way experiences and knowledge are received by others, and distort learning and progress in patient care.
Join us in Hawaii to:
Connect more deeply for greater understanding, support, shared learning, and collective change.
Access to Experts
Virtual attendance:
Online attendees miss out on direct conversation with multi-disciplinary specialists, researchers, and parent and survivor advocates from around the world. These individuals are leaders in retinoblastoma management, childhood cancer care, psycho-oncology, survivor care, and holistic support. In-person participation creates opportunities for individual discussion, clarification, and personalized advice that are not possible with virtual access.
Join us in Hawaii for:
Real-time conversation with other attendees, and the opportunity for more personalized discussion.
Networking Opportunities
Virtual attendance:
The virtual format offers very limited opportunity for spontaneous networking, which is vital for researchers, professionals, families, and survivors to form collaborative relationships and support networks.
Join us in Hawaii to:
Enjoy spontaneous networking to form new collaborations and strengthen support.
Child Life Program
Virtual attendance:
Children cannot truly interact with activities designed uniquely for our retinoblastoma community. This 3 day program for children in Hawaii will offer only brief virtual sessions due to cost and practicality. Children joining virtually will miss connecting with other children who know the Rb journey, and the one-to-one interaction and tailored support of child life specialists experienced in caring for young families affected by retinoblastoma.
Join us in Hawaii to:
Give your kids personalized retinoblastoma-specific support at the child life program – a rare opportunity to help them understand, cope with, and thrive through their experiences.
Learning and Progress
Virtual attendance:
Remote access can encourage participants to select the sessions they attend, leading to missed opportunities for holistic learning and insights across diverse aspects of retinoblastoma care.
Join us in Hawaii to:
Share with others in exploring a diverse range of topics, and help build the best holistic care for child, family, and survivor.
Program Access
Virtual attendance:
To respect participant privacy, some aspects of Family/Survivor Day can only be experienced in-person, or in real-time in virtual format, and will not be available to view in our sessions hub after the event. Breakout sessions also will not be live-streamed or videoed for later viewing due to cost and logistics. These aspects of the program will only be open to participants in Hawaii.
Virtual attendees will also miss out on key aspects of the conference beyond the formal program, such as organized social events, impromptu discussions, and informal gatherings. All of these aspects make the in-person experience more memorable, meaningful and transformative.
Join us in Hawaii to:
Engage fully in all aspects of the conference, including breakout sessions, the pre-meeting social day (October 14), organized evening events, spontaneous informal gatherings, and many wonderful ad hoc discussions.
Time-Zone Compatibility
Virtual attendance:
the schedule may pose challenges for virtual attendees depending on their time-zone relative to Hawaii (GMT-10). Sessions that are planned for optimal hours in Hawaii might translate to inconvenient times around the world, leading to missed opportunities, or participation at less than ideal hours. This can make it difficult for virtual attendees to benefit from live interactions, and potentially impact the way information is shared and absorbed.
Join us in Hawaii to:
Experience the entire program at the optimal time.
The Healing Locale
Virtual attendance:
Virtual attendees will miss out on the therapeutic, rejuvenating benefits of Hawaii’s serene tropical environment, which can offer mental restoration, well-being, and a sense of retreat. Not being physically present also means missing the holistic healing and connection embodied in Hawaii’s traditional spirit of Aloha, a key aspect of day-to-day culture throughout the islands.
Join us in Hawaii to:
Enjoy the beautiful welcome and healing environment of our Pacific location, and the uplifting perspective of this unique gathering.
For all these reasons, we are excited to finally gather in Hawaii, and share the many benefits of in-person meeting we have missed so much.
Watch Reflections from One Rb World 2017 in Washington D.C. for a taste of what you can expect in 2024 – bigger, brighter, bolder for the best care possible!
Inclusive One Rb World Registration Rates
We offer a range of registration fees to enable vital inclusive global collaboration. Please see the available rates for details and select your ticket carefully.
- Reduced rates are available for medical professionals, parents, and survivors from countries listed by the World Bank as Low Income or Lower Middle Income.
- Lower rates are available for all other parents and survivors,
Program Updates
We are regularly updating the speakers page and provisional program with more details. Please visit our Speakers page to find out more about our conference hosts and confirmed session leads, panelists and speakers.
Joining the Global Paediatric Oncology Community
In-person meetings of One Rb World take place immediately before the world congress of the International Society of Paediatric Oncology (SIOP). In 2024, the 56th SIOP World Congress will be held 17-20 October at the Honolulu Convention Centre.
SIOP is the most significant global conference for professionals working in childhood cancer, combining the annual meetings of five global professional organizations, and the world congress of Childhood Cancer International, the world’s parent and survivor advocacy organization. Parents and survivors can register for SIOP with access to the full professional program, including tracks focused on paediatric oncology nursing, paediatric psycho-oncology, paediatric oncology in developing counties, and parent/survivor advocacy. There is no child care provision at the meeting.
Please note, the congress website currently promotes this year’s congress in Ottawa, Canada, which takes place 11-14 October, 2023.
WE C Hope for All Affected by Retinoblastoma
We are excited to bring this program to you, and to share the empowering energy of our community meeting in the beautiful destination of Honolulu.
Our reviews of past One Rb World events tell of the content, collaboration, and community that awaits you in Hawaii:
One Rb World 2021: Planning, Creating, Sharing and Raising Hope Together
One Rb World 2020: Inspiring Global Support, Research and Action.
Reflecting on One Rb World 2017 – including the first-ever US national family & Survivor Day.
One Rb World 2017, Washington D.C. – a broad, collaborative program.
More About One Rb World 2024
Hawaii 2024 | 2024 Program | Child Life | Conference Hotel | Registration | Partnerships | Travel Facts | Discover Hawaii – Stay Longer | Kuleana (Responsible Travel)
