Tag Archive for: Rare Diseases Day

A collage of 8 small photos, showing buildings and people doing various activities, all bathed in green, pink, blue or purple light. Along the bottom, a banner reads "RARE DISEASE DAY GLOBAL CHAIN OF LIGHTS" and “hashtag LIGHT UP FOR RARE", written in blue, green and pink. The event logo features handprints in the three colours, overlapping to form a fan around a white silhouette of a person from waist-up, and additional colours where they overlap.

Light Up for Rare and Share Your Retinoblastoma Colours on February 29!

Retinoblastoma is a rare cancer, affecting around 1 in 16,000 live births.  Rarity poses challenges from pre-diagnosis through treatment and lifelong care – Rare Disease Day matters to our community!  Discover how you can glow bright on the evening of February 29 to help form a Global Chain of Light for everyone living with rare childhood eye cancer and its effects.

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"Our lives begin to end the day we become silent about things that matter" - MLK Jr.

Top 10 Rarely Discussed Subjects in Retinoblastoma

Retinoblastoma is a complex childhood cancer with significant impacts during treatmet and beyond, often continuing throughout life. What are the least discussed subjects in Rb research and care? Why do they matter, and how can research in these areas improve care and quality of life? Rb Survivor, Abby White explores 10 varied topics affecting patients, survivors, and family members at different stages of life.

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