While the disease you are looking for may not yet be available in RareCAP, consider these resources for information: GeneReviews® , National Organization for Rare Disorders,  Medline Plus, Omim

A RareCAP disease author is a clinician having expert knowledge in managing a specific rare disease. Working independently or with a collaborator group, the disease author develops clinical activity protocols, annually reviews/updates content, and may address comments on the platform.

A RareCAP collaborator is a clinician with extensive knowledge in managing a specific rare disease who works with the disease author contributing to the development of clinical protocols. Contact rarecap@vumc.org to request a collaboration.

If you are interested in participating in a research study or clinical trial, we encourage you to begin your search at Clinical Trials.gov or Trials Today

The best way to help is by spreading the word. Share RareCAP with everyone who has or cares for individuals with a rare disease.

Contact us at rarecap@vumc.org 

While the disease you are looking for may not yet be available in RareCAP, you can find information at National Organization for Rare Disorders. Also, consider asking your trusted healthcare partner to work with RareCAP in developing clinical protocols.

This platform is designed to provide information on the care management of rare diseases. While it may offer some general guidance, it does not directly connect you to advocacy or support groups.

If you are interested in participating in a research study or clinical trial, we encourage you to begin your search at Clinical Trials.gov or Trials Today.

RareCAP does not connect you directly with disease experts. For care management options, it is best to consult a trusted healthcare clinician who can consider your individual circumstances.

It is not recommended to try any care management without first consulting with your healthcare clinician who can assess your situation and recommend the appropriate care.

Contact us at rarecap@vumc.org