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| 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.
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 http://www.globalgenes.org .
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