We share comprehensive high-quality information about many aspects of the life-long retinoblastoma journey. Sections are written specifically for families, survivors, friends & relatives and clinicians.
We offer practical assistance to families around the world who struggle to obtain care, particularly when appropriate treatment is not available close to home, or they wish to access therapy abroad.
We moderate a number of closed Facebook communities for those affected by retinoblastoma and those who care for affected individuals and families.
What Parents Say About Us
We never guessed this cat-eye could take our little boy from us. Now his life is safe because we know and understand it so he has the proper care. We have peace about removing the eye because of your encouragement and unmeasured time for us. Thank you, thank you, thank you for helping us.
Mother of a child with unilateral RbBrazil
When you are faced with making life-changing decisions for your child, you may only have one chance. Without your efforts, I don’t think we would have had the good outcome that we now have. You are our heroes. Thank you just isn’t enough.
Mother of a child with bilateral RbFlorida, USA
My family is now with big knowing for this cancer but much late for our son and he now is sleeping. Your work is great for caring of small people in Mali. You will know some big joy from Allah for this open heart.
Father of a child who died from unilateral RbMali
We have appreciated the effort and concern you showed for our baby. We are happy because we have tried our level best to save his vision. Had both his eyes been removed without trying any medical treatment, that would have been a wound for us which may not be healed in the future. Now we don’t say “we should have tried this” “we should have gone there…..”. We have a beautiful story which we will tell him when he grows up. You helped us to get early treatment and gave us peace. Words can’t express the good feelings we have for you all.