National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Hemangioblastoma

A hemangioblastoma is a benign, highly vascular tumor that can occur in the brain, spinal cord, and retina (the light-sensitive tissue that lines the back of the eye). This tumor accounts for about 2% of brain tumors. As it enlarges, it presses on the brain and can cause neurological symptoms, such as headaches, weakness, sensory loss, balance and coordination problems, and/or hydrocephalus (a buildup of spinal fluid in the brain). Most hemangioblastomas occur sporadically. However, some people develop hemangioblastomas as part of a genetic syndrome called von Hippel-Lindau syndrome. These people usually develop multiple tumors within the brain and spinal cord over their lifetime.[1][2]
Last updated: 7/5/2011

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

Showing of 15 |
Medical Terms Other Names
Learn More:
HPO ID
80%-99% of people have these symptoms
Cerebellar edema 0030915
Cerebellar hemangioblastoma 0006880
Headache
Headaches
0002315
Intracranial cystic lesion 0010576
Nausea and vomiting 0002017
Retinal capillary hemangioma 0009711
Vertigo
Dizzy spell
0002321
30%-79% of people have these symptoms
Dysesthesia 0012534
Hypoactive bowel sounds
Decreased bowel sounds
0030144
Lower limb muscle weakness
Lower extremity weakness
Lower limb weakness
Muscle weakness in lower limbs
[ more ] 		0007340
Neurogenic bladder
Lack of bladder control due to nervous system injury
0000011
Spinal hemangioblastoma 0009713
Trigeminal neuralgia 0100661
Upper limb muscle weakness
Decreased arm strength
Weak arm
[ more ] 		0003484
5%-29% of people have these symptoms
Hydrocephalus
Too much cerebrospinal fluid in the brain
0000238
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Last updated: 7/1/2020
Most hemangioblastomas rise sporadically, without a known cause. However, in about one quarter of all cases, they are associated with von Hippel-Lindau (VHL) syndrome.[2] VHL is an inherited condition characterized by the abnormal growth of tumors in certain parts of the body. The specific tumors that are associated with VHL syndrome include hemangioblastomas of the brain, spinal cord, and retina; kidney cysts and clear cell kidney cell carcinoma; pheochromocytomas; and endolymphatic sac tumors. Mutations in the VHL gene cause von Hippel-Lindau syndrome. These mutations are inherited in an autosomal dominant pattern.[3]
Last updated: 7/5/2011
Although the exact cause of hemangioblastoma is unknown, its presence in various clinical syndromes may suggest an underlying genetic abnormality. The genetic hallmark of hemangioblastomas is the loss of function of the VHL gene.[2]

GeneTests lists the names of laboratories that are performing genetic testing for von Hippel-Lindau syndrome. To view the contact information for the clinical laboratories conducting testing, click here. Please note:  Most of the laboratories listed through GeneTests do not accept direct contact from patients and their families; therefore, if you are interested in learning more, you will need to work with a health care provider or a genetics professional.  Below, we provide a list of online resources that can assist you in locating a genetics professional near you.
Last updated: 7/5/2011
Surgery is considered the standard treatment for hemangioblastoma and usually cures this condition.[2] Following surgery, individuals who have had a hemangioblastoma should continue to visit their physician regularly for physical examinations and magnetic resonance imaging (MRI) of the brain.[2][4] These suggested guidelines for follow-up after hemangioblastoma do not state how frequently physician visits or MRIs should be.
Last updated: 1/16/2014

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Hemangioblastoma. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

In-Depth Information

  • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Hemangioblastoma. Click on the link to view a sample search on this topic.

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

  • My husband had a heangioblastoma removed many years ago. Should he have a medical check up because of his history of hemangioblastoma? See answer

  • My husband had surgery for a hemangioblastoma, but his doctors are clueless about what to do next. Should he have genetic testing? See answer


  1. Hemangioblastoma. Genetics Home Reference. June 2011; http://ghr.nlm.nih.gov/glossary=hemangioblastoma. Accessed 7/5/2011.
  2. Slavin KV & Wyler AR. Hemangioblastoma. eMedicine. May 2011; http://emedicine.medscape.com/article/250670-overview#showall. Accessed 7/5/2011.
  3. Von Hippel-Lindau Syndrome. Genetics Home Reference. July, 2012; http://ghr.nlm.nih.gov/condition/von-hippel-lindau-syndrome.
  4. National Comprehensive Cancer Network. Central Nervous System Cancers. NCCN Clinical Practice Guidelines in Oncology. 2014; Version 2.2014:http://www.nccn.org/professionals/physician_gls/pdf/cns.pdf. Accessed 4/13/2015.
  5. Duplicate- please use 10529. Von Hippel-Lindau Syndrome. Genetics Home Reference (GHR). July 2008; http://ghr.nlm.nih.gov/condition/von-hippel-lindau-syndrome. Accessed 7/5/2011.