Friday, October 21, 2016

Make An Impact...Help Researchers Test A Survey for Diagnosing Rare Diseases

Take the Survey Today!
By Kara Jackman

Have a rare disease or want to help family and friends that do? Take part in the testing of a survey tool created by Engage Health and LapidusData for Global Genes. With your expertise in the area of rare diseases, an improved form of the survey will be distributed widely to help identify whether a person has a rare disease. And based upon their answers to the questions that are part of the tool, they will be directed toward an appropriate set of resources to help in their treatment.

How Does It Work?

The researchers from Engage Health and LapidusData say, “The tool uses a set of questions that ask about common experiences of rare disease patients. If their answers indicate that they have a rare disease, the tool would then provide them with helpful resources that they may not have been aware of.” People unaffected by rare diseases can take the survey as well.

Where Can I Find the Survey?

The survey is located at this link.. If you have any questions regarding the survey, please send an email to Maureen McArthur.
What Is A Rare Disease?
A rare disease is one that only affects 200,000 or fewer people. In the U.S. ten percent of the population has a rare disease. Patients have a difficult time communicating, receiving quality medical treatment, and getting a diagnosis from medical professionals.

Who is Global Genes?

Global Genes is a California-based, national nonprofit that strives to change the current state of those suffering from a rare disease through advocacy. Through this survey, you can aid them in their fight to destroy these barriers to treatment. Global Genes mission statement asserts, “to eliminate the Challenges of Rare Disease by building awareness, educating the global community, and providing critical connections and resources that equip advocates to become activists for their disease.“ Learn more about their work at .

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