A Resource for Information About a Rare Disease or Related Organization

 

The name of the organization is Disease InfoSearch. It is not only a resource for credible information but guides patients and families to valuable support groups and participation in research.

Disease InfoSearch uses a database that contains over ten thousand conditions provided by thousands of contributors. It is an arm of Genetic Alliance which is considered the leading nonprofit advocacy organization for health services in the world.

The originators of Disease InfoSearch were aware of the time that must be devoted to searching for a specific disease as well as coming up against sources that are not always reliable. There has been considerable energy behind their plan to connect the reader to much-needed and possibly life-saving information.

The research available in Disease InfoSearch is collected from clinical trials, journal articles, and current news or events. The disease description, for the sake of accuracy, comes from websites such as:

  • NIH
  • Healthline
  • Mayo Clinic
  • Orphanet
  • Genetic Home References
  • WebMD

Many of the articles listed are written by the team at Disease InfoSearch and undergo review by a genetic counselor.

From Printed Directory to Information Sharing

The publication first appeared in print. In 2005 Disease InfoSearch was featured in the directory as an improved, accessible tool to share information.

Then in 2013 Disease InfoSearch was transformed into a standalone website that provides extensive knowledge about various diseases.

The publication gradually began to include support organization listings, disease descriptions obtained by a larger number of participants (crowdsourced), journal articles, clinical trials, and website links.

Tutorials have been set up to make the website user-friendly. The website has an FAQ page as well.

Development for Disease InfoSearch was made possible by Federal Grants and the Helmsley Charitable Trust.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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