Rare childhood cancers make up 1% of cases but have major impact. Learn rising trends, CNS tumors, ultra rare types, early diagnosis, specialized care, and advocacy for better outcomes.

RARE CHILDHOOD DISEASES: 

ARE CANCERS UNCOMMON?

WHY ARE PEDIATRIC CANCERS CONSIDERED RARE?

Only 1% of new cancers occur in children. Under the U.S. Rare Diseases Act (2002), all pediatric cancers qualify as rare diseases.

ARE RATES RISING? TRENDS SINCE 1975

Incidence has slowly risen since 1975, reinforcing the need for awareness and earlier detection.

GLOBAL BURDEN: 400,000 NEW CASES/YEAR

Around 400,000 global cases yearly; 15,000 in the U.S. among under 20s significant strain on families and systems.

CLASSIFICATION: LEUKEMIAS, LYMPHOMAS, CNS TUMORS

ICCC classification guides treatment. Diversity of types complicates diagnosis and care.

BRAIN & CNS TUMORS: WHY CHALLENGING?

Location and delicate structures demand multidisciplinary care surgery, radiation, chemotherapy.

ULTRA RARE MALIGNANCIES: SPECIALIZED CARE

Very low incidence cancers need tailored protocols and international collaboration.

DIAGNOSTIC CHALLENGES: DON’T MISS THE SIGNS

Nonspecific symptoms delay diagnosis; genetic testing, imaging, biomarkers speed accurate detection.

TREATMENT ADVANCES: 5 YEAR SURVIVAL UP TO 80%

Since 1975, pediatric cancer deaths dropped by over 50% due to evidence based and targeted treatments. Today, five year survival is around 80% in developed countries.

PATH FORWARD: AWARENESS & PERSONALIZATION

NGS and molecular profiling personalize care. Awareness and survivorship follow up improve quality of life.

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