Living with Rhabdoid tumor predisposition syndrome
An inherited condition that raises the risk of rhabdoid tumors, usually in babies and young children.
Understanding Rhabdoid tumor predisposition syndrome
Rhabdoid tumors are fast-growing cancers. In RTPS they usually appear in the first months of life and can even occur before birth. Some children have more than one tumor at once. They can occur in the brain, spinal cord, kidneys, or other organs. Some children also develop non-cancerous nerve tumors called schwannomas.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these:
- Rhabdoid tumors in the brain, kidneys, or other organs
- More than one tumor at the same time
- Non-cancerous nerve tumors (schwannomas)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD lists autosomal dominant inheritance, so one changed copy of a gene can be enough. It does not name a gene in this record.
Also known as: familial posterior fossa brain tumor syndrome of infancy; familial posterior fossa brain tumour syndrome of infancy; familial rhabdoid tumor; hereditary rhabdoid tumor; hereditary rhabdoid tumour; rhabdoid predisposition syndrome
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Rhabdoid tumor predisposition syndrome.
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