We have an important request to test a project our team is working on, and we would really like your input.  If you have any questions on this project, please email Maureen McArthur at maureenm@globalgenes.org

Less than 10% of the 30 million patients with a rare disease are part of the broad rare disease support network. Global Genes is partnering with Engage Health Inc. and LapidusData to develop a “Rare Disease Self-Identification Tool”, a tool which could help rare disease patients and advocates who are not aware of this support network become better connected to tools, resources, and the community.

We have created a set of simple questions that asks whether someone’s journey for diagnosis and treatment is similar to the experiences of rare disease patients. If their answers indicate that they may be on a rare disease journey, the tool will direct them to helpful resources that they may not have been aware of.

The questions have been developed based on the experiences of rare disease patients, input from members of the Global Genes Medical and Scientific Advisory Board, and patient advocates.

 This first-of-its-kind effort will connect and educate patients and families, helping them become active participants in their own or their loved one’s health. 

 

How you can help:

We are still developing this tool, so our goal today is to test whether the survey is asking the right questions to identify people with rare diseases: do people with rare diseases give different answers to these questions from people without rare diseases?

You can help by providing your own answers to the questions, which should take about 10 minutes. Please also forward this survey to others – others with rare diseases and others with non-rare diseases – we need many people from both groups to test the survey.

The survey can be found here.

If you are unable to reach the survey from this link, please copy and paste the following into your browser bar: https://www.engagehealth.com/survey/TakeSurvey.aspx?SurveyID=ll22n5l 

We appreciate you taking a small part of your day to help test these questions. Please remember that 10% of the US population suffers from a rare disease. Even if you do not personally have a rare disease, this survey may one day help your family or friends.

 

Thank you in advance for your participation and help!

X