Survivors of retinoblastoma, parents, grandparents, extended family, and friends the world over are connecting via social media, Together, we are weaving a global web of support, knowledge, experience and hope.
In February 2020, we published the following two blog posts discussing safe, supportive, and respectful use of social media, for both parents and survivors. We recommend reading both articles before asking questions abour retinoblastoma or offering advice on any social forum.
When someone asks for support on social media, instincts drives us to offer hopeful solutions. But without full knowledge and understanding, we may cause more harm than help. Reviewing real interactions and their outcomes, we share key points to consider when discussing retinoblastoma, and how to respond well.
Social Media Support: 7 Ways to Respond Effectively, and Why Our Responses Matter
How we respond to one another in retinoblastoma support forums, and the information we share, can significantly impact patient care and outcomes. Here are 7 ways we can respond positively to any social media request for help, to improve communication, support, and best care for the child/survivor and family.
List of Rb Communities on Social Media
The following are private, moderated communities that may be valuable to you if your or a family member is affected by retinoblasoma. We hope this directory will grow in time to include resources specifically relevant to many countries and regions around the world.
If you know of a good resource not listed here, please email web@wechope.org with the information so we can look into listing it.
We bring life and sight saving opportunities to children and survivors worldwide by educating about retinoblastoma; empowering evidence-based care; and enabling effective family support. This group welcomes all in the global retinoblastoma community who wish to join us on this journey, to share experience, insight and support, and help create best possible care for every child, survivor and family.
Treatment Center and Regional Communities
You are welcome to join any of the following treatment center specific groups, only if you or your child has received care there.
For survivors and families who receive/d care in Boston (Mass Eye & Ear Institute, Boston Children’s Hospital, Dana Farber Cancer Center).
For survivors and families who receive/d care at Children’s Hospital Los Angeles
For survivors and families who receive/d care at the Retinoblastoma Center of Houston (MD Anderson Cancer Center, Texas Children’s Cancer Center, Methodist Hospital).
For survivors and families who receive/d care at Memorial Sloan Kettering Cancer Center or New York Presbyterian / Columbia University Medical Center.
For survivors and families who receive/d care in Miami
WE C Hope USA Philadelphia Center
For survivors and families who receive/d care at Wills Eye Institute / CHOP.
Independent of WE C Hope. Established by two mothers whose children receive care at St Jude Children’s Research Hospital in Memphis, USA.
WE C Hope USA Smaller Rb Centers
If you or your child receive/d care at any US hospital other than those listed above, please feel welcome to join this group.
Our Retinoblastoma Family
The following communities are created specifically for mothers, fathers, parents, grandparents, survivors or teenagers, and communities around the world.
You must be the mother of an Rb affected child or adult to join.
You must be the father of an Rb affected child or adult to join.
Families of a Child With Retinoblastom
A global community, established by mothers in Canada and the USA.
A community of families who share the experience of raising a child with an artificial eye. Causes of eye-loss range from medical diagnosis to accident and deliberate injury.
For anyone who has lost a child or other relative to Retinoblastoma or a second primary cancer after cure of the initial eye cancer.
Survivors must be aged under 18 to join. This group is moderated by the mother of an Rb survivor, who is also a Teacher of the Visually Impaired.
You must be a survivor of retinoblastoma, aged over 18 to join this group.
For UK survivors aged 18 years and over. Established by the UK Childhood Eye Cancer Trust to facilitate communication between its adult survivors network.
CHECT (UK) Rb Parents Support Group
Established and moderated by the UK Childhood Eye Cancer Trust
Established and monitored by Canadian parents and survivors.
